sally

Hi Melly, I'm not sure if you have tried preventative medications to keep the migraines away but they did work for my daughter who suffered severe migraines called hemiplegic migraines (stroke like) that started when she was about 5 years old. They did not stop until she was about 18. She was dx'd with migraines at age 7/8 and hemplegic at age 12 due to the severity and seeing specialists. The only relief she got from these horrible type migraines (that at one point in her young life had an occurrences of at least once a week) was taking meds called elavil & propranolol every day. The longer she was on it the better the results, it started out lessening the migraines and severity overtime until eventually they ceased all together. When she was migraine free for sometime, they weaned her off the medication. It made a huge difference for her taking those type meds. Also we changed diet habits; sleep etc to help as well. I wish you the best and hope you feel better, migraines are a horrible thing.

Hi Briarrose, I'm not sure where you are located but have you ever seen a DO rather than a MD? My experience has been a good one with a DO. They learn the whole body system and how it impacts on one another including diet, how you live etc... where normally if I'm not mistaken, MDs studying on a more specialized body part. DOs specialize as well into different areas of the medical profession such as cardiologist etc. Just a thought. Good luck

Nina, I'm sorry to hear this person upset you. It can be so difficult trying to maintain while dealing with chronic health issues as well, we all know too well. Some people just don't understand the extra effort it takes just to accomplish the same things that alot of people just take for granted. Is this guy your boss? If so, I would recommend filling out paperwork through your employers human resource and employee health department to protect you from any complications or firing for missed time due to your ADA recongized physical disability. If you haven't already done so that is. When they hear that you are aware of your rights under the ADA they usually take notice and back off. Other than that you do not need to explain any physical problems to this guy unless you want to of course. I understand the need to educate the employers or coworkers but sometimes these type individuals will turn that against you in the long run. Just a word of advice because I've seen it happen and it made things very difficult for the person. As you well know alot of 'norms' who have never experienced so much as a cold do not understand illness anyway, let alone a complicated chronic ailment such as we all experience and might look at these type of things as weakness not understanding. Unless this person has someone in the family thats ill of course they just don't get it. When this type thing has happened to me I just explain that due to health reasons I will not be attending. So let them get frustrated, as long as I was doing my job to the best of my ability (which was usually more than alot of the people around me) I didn't care what they thought and don't let this person make you feel guilty. Especially when your health demands attention. Of course, to really make him happy you could have just gone in anyway and then fainted across his lap and then he would have needed to call 911...just to get the point accross. Pat yourself on the back and take the well needed break and you know what they say about peoples' opinions.....

Hi Amy, If I may suggest....keep a careful eye on it that you don't get cellulitis which can happen with bee stings or spider/insect bites. It will feel hotter than the area around it and the redness will get larger as the day progresses. If you have cellulitis, you may require an anitbiotic. Hope you feel better.

Hi Julie, I sent you an email regarding physician information. Please let me know if you did not recieve it so I can try again if you want. I'm not sure if I sent it successfully. Thanks. sal

I understand the issue, I just thought that she might be interested in contact directly if more information was needed to find out where she might be heading and what she is involved with within studies, etc... sorry

Hi, Here's the link to NIH Dr. Clair Francomano, I don't know if the email is current. She is a geneticist who studies genetics disorders, EDS is just one of the studies I believe. http://www.grc.nia.nih.gov/branches/lg/hgims/clairf.htm good luck

Just to give some insight as well on this subject. Per Johns Hopkins docs EDS does play a role in orthostatic problems due to laxity of the blood vessels from EDS causing blood pooliing in lower extremities that also causes circulation problems with blue cold toes or fingers etc. Also Per Dr. Rowe published articles as I'm sure you've probably aready seen. It's dual diagnosis given per Johns Hopkins when orthostatic problems are occuring with Ehlers Danlos patients. Although it's not so leave out that you could have this problem by itself without EDS as well. good luck

Hello Patricia Wow, this is a tough one. Everyone will certainly have a variety of different feelings on this subject pertaining to having children when you have any type of illness especially if it's genetic in nature. Personally for myself, I believe in the old saying that there are no guarantees in life especially when it comes to health issues. You could adopt a perfectly healthy beautiful child and then find out that he/she has a terrible chronic illness or any type deadly disease such as cancer, which you were not aware of upon adoption. Most assuredly you would feel awful watching any child suffer from an illness/disease and feel totally helpless as a bystander. But for the love of the child or person you would most certainly stand strong as possible to help them through their personal trials while dealing with any terrible illness no matter what the condition or how long they lived because of the disease. As far as the genetic issues, most people from what I've read when researching genetic disorders have at least 5 different genetic disorders. Most of which they don't even realize they have or know about until a later date as the diseases present themselves. I think the decision is a personal one and the potential parent should consider whether or not to proceed with having children depending on the disease that could pass down. If you have the benefit of knowledge beforehand you can go into the decision more aware. And yet there are still no guarantees, as in most genetic illness it's a gamble. I'm very sorry about the trials you & your daughter are experiencing and the heartbreak you must be feeling while going through this along side her. Your daughter will realize differently as she gets older and more able to reflect on her situation that usually only comes with time. She in time will see the courage you display in facing a terrible life changing illness such as this one every time you take care of her needs while fighting tears and by the support you show. And she will see the love you give unconditionally to someone by listening to any fears & frustrations she may display towards you at this time in her life. By having a chronic illness yourself, you also give the benefit of understanding towards the child, which is a biggie in my book. Most normal people who have never been ill cannot understand what it feels like. That is something special that you and your child share just at this basic level. Believe me; I do understand what you are feeling. I, as many on here have dealt with long term chronic illness and having children who have received the same sentence with the same health problems due to genetics. It's a hard thing to contend with at times but I feel that no matter what, life is a gift and also is ever-changing. What is today, may not always be. My girls have taught me tons about life and courage. I have been witness to my girls who have Ehlers Danlos Syndrome, chronic pain, chronic fatigue, Dysautonomia, Ulcerative colitis suffer terribly at times and fight the frustration of not being normal (whatever that is) but they have tremendous courage, compassion, twisted sense of humor, tremendous love for small things just as much as any large accomplishments, love for family, ability to weed out false friends, insincere people, just to mention a few lessons all due to having chronic health issues. These things are what having a chronic illness have taught them in their young life so far which I feel are positive qualities. These are qualities that alot of people never learn throughout their lifetime. And yes, sometimes they cry and wish things are different but I have always told them, Okay...this is what you are dealt now what can we all do to help you through it and lets see how we are going to make this work? And sometimes it means just listening to frustration. I hope you understand what I'm trying to convey to you and I do hope I haven't offended you by any statements I have made on this subject but it's a subject that is dear to my heart. I do wish you and your daughter the best. Many blessings, sal

wow Katherine great site! thanks for entering it. lots of good but scary information that everyone needs to be aware of. I found the information on teflon very interesting especially that it stated dupont has known about it for over 50 years but just keeps right on making and selling it. lovely! kinda makes you think about all the strange illnesses that the public has that docs can not explain just might be a direct effect from all these scary chemicals that are in the food, water and more.

Hi MaryJo Yes EDSers can have extended bleeding tmes more than normal. There is a tendency to have prolonged bleeding in spite of normal coagulation status [beighton, 1993; Steinmann et al., 1993]. They may also have mentrual flow be affected. That's why EDSers also bruise so easily and freq. If you are concerned, your doc could order a bleeding time test just to be sure that there is nothing else that is going on. Mine was about 10 minutes to coag which is longer than normal but nothing was wrong with my blood. I hope this helps. good luck

duplicate sorry

Dear goldicedance Thank you for your reply, everything is done (thank goodness!) and went fairly well this time. My blood pressure was an issue but everyone at the hospital I dealt with was fantastic. I had an anesthesiologist this time for sedation plus I took my midodrine before hand which bumped up my pressure and I'm glad I did because the pressure went down pretty low due to sedation effects after. They even gave me something for nausea just in case before hand. Everyone was very efficient and compassionate and friendly which made the whole experience a better one than the last one. Mind you I still feel like I've been hit by a bus but at least it was a big improvement than last time. I'm sorry you experienced a migraine from yours I can't imagine that on top of dealing with everything else....that would definitely be the pitts! Don't you just love all our complexities? nothing can ever just be simple it seems. Thanks again and hope all is well with you.

*

Hi Chrissy, I would be very careful as to what type of ride you are going on as you may pass out. Depending on how touchy your blood pressure problem is that is. Before we knew about not going on these type rides, our daughter lost consciences briefly on a ride, it was a ride that was like a centrifuge (spun in circles very fast). She had chest pains after this type ride. Also alot of the roller coasters bother both children. When she has braved it and gone ahead she made sure that she had taken her meds early enough and was very hydrated and ate a lot of salt that day, she ended up still being bothered but not as bad. It just depends on you, each person is different to what degree they are bothered by dysautonomia but I wouldn't recommend it without asking your doc first anyway. The water rides didn't seem to bother them though, I think it was mostly the ones that flipped upside down or held them in a certain position that was similiar to a tilt table test. I know it's hard to sit and watch others but it's better to be safe than to pay later and wish you hadn't done it. Just check with your doc, he'll/she'll know best. good luck and Happy Birthday!

what part is shaking? depending on what type of tremor you could be experiencing symptoms of many disorders including parkinsons or just benign essential tremor. There is several types of tremors such as resting and action tremor and frequency(how quick)of the tremor comes into play...those type things determine what type tremor you have. Have you seen your doc on this? Good luck and hope you feel better soon.

Many blessings and positive thoughts sent your way to the people in London. I hope everyone is okay and safe. We are thinking of you.

Hi persephone just wanted to comment on the chest pain. EDSers commonly have chest pain due to many factors such as mitral value and just plain strain of the cartilage. It is possible to strain the sterum and it will hurt like crazy. Also costeochrondritis can occur and it is very painful to touch. People with EDS also can dislocate their ribs which are usually the lower ones though but it causes pain and the muscles and tissues feel very sore to touch. My daughters and I have also experienced this problem. I got one for you....my daughters have dislocated their throat and have to move it back in place, this has only happened a few times thanks goodness, it's rather startling when it happens. The doc said it is uncommon but possible to the cartiliage being affected by the EDS....weird huh? good luck and hope you are feeling better soon.

Hi Ariella, Sorry to hear that your children may be affected by this problem as well. Placing a diagnosis can be a pro & con decision. It's difficult I know, watching your children deal with a health problem such as this, especially when you know first hand what they might have to overcome. Both our girls have this problem and ehlers danlos among other disorders as well, so I understand the need to have answers and not wanting to see them endure something and trying to fix what you can as soon as possible. I think you'll know best when the time is right to proceed with a diagnosis and treatment. Only time will tell though just how soon and depending how difficult a time the child is having to function throughout the day. If your children start experiencing more difficulties, it might not hurt to get a diagnosis and treatment plan started because you may need to make accommodations for him or her at school to make things easier. I know we did, as they couldn't have gotten through a school day without making accommodations. It was a requirement in order for them to function and finish the day. In our case.....I didn't worry too much about placing a label on my children. I was more focused on fixing the problem than what a physician or insurance company might think down the road. I also at the time was informed about possible labeling by only one certain physician to whom I simply stated "why not put a diagnosis on the problem if it's warranted, it could only be beneficial to direct things towards the correct treatment needed". Plus I've found that more concern and respect was shown when there was a diagnosis given for what we were experiencing. But we didn't get any answers until we sought out help from the docs at Johns Hopkins and in our case; it made all the difference in the world. It didn't however; give us any real fixes to the problems other than symptomatic results for some of the things that were going on but it did give us the reason why, which for us was very important. Plus it helped for accommodations needed at the time and in the future. It did however effect insurance purchase for the oldest but it would have anyway in her case as she has Ulcerative colitis as well and that is also considered a pre-existing condition. Unfortunately that the price of things I guess when dealing with these type disorders. I wish you the best and hope things improve with the health of your little ones. Best wishes

We'll all have to blame it on those dropping prices that they always advertise on TV .... But seriously...I'm sorry that happened to you, it must have been scary!! Glad you are feeling better now. Thank goodness they called the ambulance quickly for you to get you some fluids, was it hot outside at the time? Hope your day improved and you're feeling better soon.

I experience this type of thing as well when my heart rate is too high and bp too low. sometimes get too breathless to even talk. Maybe have your doc order a pulmonary function test to make sure everything is okay and rule out asthma etc. good luck

everyone had wonderful suggestions, I especially like the soup suggestion. I like tv dinners especially stouffers. TV dins are great for lunch and have very high sodium. I also like to snack on pickles which as also high in sodium. pretzels are great as well.

What a beautiful baby! Great pics. Congrats to your family on your new addition.

Hi radha, I know you said you can't do needlepoint but have you tried the plastic canvas type needlepoint? It's larger holes in the plastic canvas make it easier on the eyes to do and it is basic stitches and you can get basic designs that look very nice. there is also rug hooking that is fun and also has larger type holes for the fabric that is easy on the eyes to do and easy to manipulate incase you have trouble with your fingers or hands. Plus it's really fast so you can see fast results to avoid getting board with it. good luck

Dear Jan, I'm so sorry to read that your husband has this to overcome and send blessings and well wishes to both of you. I agree a person needs hope to get through anything especially something as terrible as what he must face at this time. (and you as well) Good luck with your second opinion and treatment plan whichever your decision takes you.