sally

I think sinus problems/headache can turn into a migraine for some people. have you ever tried frova?

Hi Adrienne, yes, the tingling you experience is probably from the midodrine...at least we've experienced this symptom from it...it usually goes away the longer you are on it. Speaking as a mom of two college grads that have EDS & dysautonomia...try your best to pace yourself as best as possible. For our girls, they would eat salty things constantly & drink gratorade and took lots of naps whenever possible. They also would eat microwave dinners for lunches as they have tons of salt content in them. They also tried to see about scheduling things later in the day when they usually felt better if possible. (not aways able to do that though). Made sure that they took their midodrine first thing in the AM especially if they were do studying or testing otherwise nothing would get in.... It did not take the orthostatic problem away but these are things that helped along with taking midodrine but it was terribly hard during college when they were required to perform normally. Our oldest struggled the most with nausea so that made things more difficult for her. I'm not sure where you are located at school in Florida, but our youngest went to college in Florida....she saw doctors at USF medical there that she really liked. I wish you the best and hope you find a physician that will work well with you.

Hi Brenda, Hope your daughter feels better very soon....that's a horrible thing to deal with. It still sounds like benign positional vertigo to me with the dizziness or some type of inner ear thing going on. I take it the doctors have evaluated her for this problem or given her a mri to make sure things are okay otherwise. Has she tried Midodrine? We use this and have had good results with this medication with little or no side effects just benefits. i sent you a IM after the first time you posted, i'm not sure if you rec it or not. good luck and best wishes sent to you.

Hello, Have these violent men been arrested for this assault? Hope your son feels better soon. A word of caution about his being kicked in the head...if he has injury to his nose and eyes and he is not acting himself (aside the trauma), I would see that he get a MRI of his brain for brain injury especially if he was kicked in the head, if you haven't already done so. I know from experience, we have been dealing with the outcomes of a brain injury from a car accident for the last two years and it can have lasting affects on someone's life and I wished back then someone would have informed us the impact. Take care.

My daughter used to get the same symptoms with her migraines and she was diagnosed with hemiplegic migraines. They were horrible. stroke like symptoms. She was not permitted to use Imitrex with these type of migraines but did take medications everyday to help lessen the symptoms and freq as she was having migraines 1 to 2 times a week before medications. good luck and hope your daughter is feeling better.

Hello, 3 of us have EDS and all three have difficulties with swallowing certain foods such as bread, starch foods and leafy greens as lettuce. it always takes extra swallows to get the food down compared to normal people. We take smaller bites. Our girls have also complained about getting their throat out of place at times (says its a very strange sensation). EDS is quite the complex never ending giving disorder. Although you may want to have a Doctor make sure there is nothing else going on just to be sure.

Nolie, Sorry to hear about your daughter feeling so poorly. I know it is terribly difficult to watch your child feel like this and struggle with things along the way because of this illness. This is a hard struggle to deal with I know and my best advice for you (having dealt with two girls with this problem as well as EDS & among other dx's) is to talk with your daughter about pacing herself with outside sports or anything strenuous until she feels up to it and not push herself beyond her limits at this time even if it means that she has to take a long break until she feels better. That in itself can cause anger when dealing with chronic illness feeling like you can't keep up with everyone else. Taking a break from the fast pace of what is considered a normal persons pace is okay and necessary sometimes until strength returns enough to cope better. I think its the hardest thing to deal with any illness especially a young person who just wants to do the things they would like to do without all the hassle or feeling poorly. I think the advice of viewing Dynakids is a sound one. plus it shows her that she is not alone with this disorder. It sounds like you are doing all the right things for her care and getting her over this hill. Our girls have also had to let go of many things over past years and re-arranged their interests so I can sympathize with you in the frustration that you feel. Just mainly she needs to give herself permission to take a break for now and hopefully after they get things stabilized with medications etc, things might be able to get back on track again when she is feeling better or maybe something else will take place that may be a better interest for her in the long run. For example, my one daughter had to let go of things that she loved doing...years of dance & playing lacrosse & flags due to her health all within a short amount of time. It was terribly difficult for her but she said it just wasn't worth the pain and exhaustion of doing these things that it caused her body in the long run of things. Overtime when she felt up to things, she fell in love with theatre among other things that were not so physically strenuous that became her passion for quite a while and it opened up other doors of interest. Maybe discuss with her school officals if it is possible to homeschool while she is feeling her worse. The heat will most definetly make her feel poorly. When our girls have to do anything outside or physical they usually start 'salting up' and increasing fluids the day before any scheduled event, it helps some. Also maybe try the compression stockings if you haven't already. I wish you the best and hope your daughter feels better soon.

daughter used a tens machine with good results. hers was about the size of a pager. it was one of the things that she did that seemed to help the pain from EDS. good luck.

hi just sent you a pm.

Hi, I'm sorry to hear that your daughter has been dx'd with this problem. its tough i know. The best advice i can give you is to learn about how to best help your daughter get through her day at school without expending too much of her precious energy. You will have to be the advocate for your child in school for things such as no gym or limited exercise if needed. have someone carry her books or note taking in class, extra test time, etc. some of these things you may already by aware of. Just making little changes can make a huge different in how someone may feel at the off the day I think. for our daughter, she stopped taking gym entirely and typed everything on a laptop instead of hand writing, and received teachers class notes for studying to save her from long writing. you can also see about books at school and books at home to avoid the carrying of books especially when she gets into the upper classes..they always weigh a ton. We made a lot of changes for our daughter in school to help her achieve what she wanted without wasting alot of energy that she didn't have to waste. Plus she has EDS so she had alot of pain to deal with as well. We also tried our best to make sure she understood on listening to her body and act accordingly to how she might be feeling that day...its all about learning balance. We praised her achievements highly no matter how little they may seem to others because when she did something and accomplished it especially while feeling like she did it was a huge achievement. Plus it helped give her encouragement when she was feeling like she couldn't do it. she gave up alot of things that she loved in high school due to health but we replaced them with other things that she learned to love just as much. I know you are feeling angry watching your daughter deal with this but try your best to get past the anger, guilt & frustration that you feel about passing this on to her, it does no one any good especially for you and your daughter. Tell her that at the very least you can relate to what she is feeling and experiencing as she grows up learning to live with this disorder. It will be a valuable tool for her in the future. And she will take comfort in knowing she has someone close that truly understands what she is experiencing when her friends do not. I passed EDS & the autonomic problems onto both of my girls plus one has ulcerative colitis to boot. The guilt is a hard pill to swallow but somehow you just have to find your way to understand that you did not purposefully inflict the disorder on her so it is not your fault. You can have perfectly healthy parents and have a child that has a genetic disorder that has been carried down for generations unknown to anyone. Hopefully as your daughter grows up things will get better over time. For us, learning coping skills and coping tools to get by better in life makes things a little better but acceptance was key to be able to get past all the negative stuff that just upsets you. I did allow myself time to get past these feelings, I'm not saying don't ever feel them, that is natural but things will get better with time. Our girls are now 22 & 25 still have the same health issues and deal with them on a daily basis and we have climbed many mountains at times as I call them so I can totally relate to what you are feeling. Our oldest just graduated college (teaching) in Jan (took her longer after many set backs due to health but finally made it). Our youngest will graduate this May and desires to go the medical school if possible. (she was in a terrible car accident so we're working on that to get over that hill) She has had just as many trials and tribulations as the older one. This is after many tears, fears & feeling like giving up so many times I don't care to count over the years. We've climbed SO many hills & mountains over the years with health issues that I don't think anything of it anymore, I just consider it one more stupid hill to get around and how do we do it as quickly as possible to get things back on track. I'm not telling you this to brag so please don't misunderstand me, it?s to give encouragement that things may work out too. Good luck to you and your daughter and I do hope she feels better soon.

Hi Maxine, Our oldest daughter had a colonoscopy while awake during the entire procedure because of her blood pressure problems and the physician didn't feel safe sedating her for it due to that issue. It went along just fine and she did great. He didn't hurt her at all because he took his time. This might be a method for a colonoscopy for you incase they are concerned for your breathing during the procedure. I know most people, including myself, want to knocked out cold as a turkey before you have this particular procedure done but I witnessed this physician doing the one for my daughter and it didn't seem to bother her at all. It was the thought of it for her that scared her not the actual procedure as it turned out due to his patience & skill. Good luck with yours and hope all goes well, I know the prep experience is the worst part.

Hi Sophia I sent you a PM

Hi Pat, Haven't taken it but the electrophysicist wanted me on it to bring the heart rate down. But after seeing the side effect of sudden death I declined. May have to take it eventually though. He wanted to put in a loop monitor in as well for other reasons heart rate wise but I'm not too sure about taking those steps yet. How has this particular medication helped you if you don't mind me asking?

Hi Leigh, I think I understand what you are getting at. I agree that it's best when you don't have any energy to spare....to focus on what is important, which is taking care of your son & yourself. I understand what you are saying and unless you are totally alienating yourself from everyone, I don't feel it is isolating yourself, I think it has to do with making adjustments to best meet your needs and responsibilities. A survival mechanism so to speak. I have found over the years that many times people just do not understand about chronic illnesses and how they impact a persons life because they.....first do not understand the disorder or illness, or don't have the interest to learn about it or have never had to deal with such type illness before so they may not know how to react properly towards what is happening. It is a difficult balance for sure. If you have understanding friends that are givers and not takers, after explaining through literature or links to the site for information they should have a better understanding on how this illness impacts your life. Then maybe you can make positive adjustments with your friends. One thing is maybe using a phrase that clues them in that you are having a really bad that day and they'll know how to adjust accordingly. In our family, we call it...."I'm having a really heavy gravity day" (after first explaining to them what it means such as extreme fatigue, weakness, feeling sick etc..) but just that simple phrase lets people know to allow us extra time to rest or get ready or if we have to bail out on something at the last minute etc without going into alot of drama of explaining constantly on the little details of what we may be experiencing at that particular moment or day. that in itself can grow tiresome having to always explain how you are feeling. I have also told certain people, if I seem distant or quiet and aloof towards them, please don't take it personally, it is not something they have done it is just that at that time, I am feeling very poorly. It helps take the tension out of the situation and doesn't make the other person feel that they have done something wrong. But, I think if your friends are expecting you to be a tower of strength and just perk up when they want to then you may have to spell out more of what you are capable of when you feeling at your worst. The ones that can't understand or don't want to will bail and the friends who care will stay. And, those friends are the treasures that you want to hang onto. many blessings to you.

dionna sorry to hear about what your family is doing to you. I'm not sure of your financial situation and whether or not you are on military disability or regular disability etc... but , Have you contacted your local Social Services agency? You should not have to reside in such an abusive environment. Maybe you can check on residing with someone else close to you or check into social services to see about residing in your own place with help if possible. If you haven't already checked, you may want to call to find out what you need to do to get disability if you haven't done so plus medicaid for insurance. Plus there is housing avail for the disabled or low income depending in your financial situation, that require no payments or small payments through what we call Section 8 vouchers here in our state. I'm sure most states should have it available. You may have to be on a waiting list but at least you'll know that something is out working for you to get into a better environment. In our state a person can reside in the state housing or rent with a landlord in a section 8 available homes whether is is a house or apartment. These homes or apartments are inspected by the state agency for safety etc and then the rent is paid directly to the landlord, so the tenant doesn't have to worry about the rent being paid or not monthly. And, they are usually yearly leased and inspected. Plus there are agencies to help with the electric and other things as well. If you require a person to help you, there are programs that should be available to come in and help with things such as cleaning and cooking pluse medical needs if needed. And if it is necessary, a live in Paid person can be made available depending on your health situation or the states availability of funds or persons. Plus you can receive state aid for food as well. Now all these things are based on your income so there are limitations or cut off for income..that the social services dept can advise you what that is. But you still may want to check on housing information or whatever help you can recieve. I'm not sure of where you reside but here a few links... http://www.ncdhhs.gov/aging/housing2.htm#2 http://www.govbenefits.gov/govbenefits_en.portal http://www.hud.gov/local/index.cfm?state=s...p;topic=renting http://www.cchra.net/ http://www.chasc.org/cola/ http://www.hud.gov/local/index.cfm Good luck and best wishes.

Hi Kim I've taken Ketek two different times for sinus infections. Never experienced any problem what so ever with it. I did take it with food though to avoid any possible stomach upset on my part. No visual problems were noticed either for me. I like that particular antibiotic myself better than others I've taken in the past. good luck

Hi Lulu Sorry to you were injured. Sounds like quite a day! Concussions can be quite serious, most people however heal up nicely with not too much difficulty from what I've been told. But, a certain percentage remain having difficulties that effect memory, emotions, decision making, changes in personality, outlook, headaches, fatigue, vertigo etc. Our daughter was in a bad accident about 1 year ago now and still has deficets and complications from her head injury/concussion. It has changed the way she was and the way she deals with things. She falls in the small percentage of people who have problems long term and will probably have these difficulties permanetly. We are dealing with that now with a neurologist. No one informed us of the lasting and problems a concussion can cause to a person. All we were told is she would get better in 3 months, then it was 6 months then it was 1 year now informed it is lasting. She has problems with short term memory, emotions, headaches often, vertigo, insight changes, and all the above symptoms as well. This person had an acute superior memory compared to the average person and now has trouble with short term memory, word searching, switches up letters in words, etc. She has to work harder than she's had to in the past prior to the accident for studying etc. It has been a difficult blow to her aspirations in college at a crucial year. I wish you the best and hopefully your concussion will be short lived, I tell you these things, not to scare you but to inform you what we are now learning about and were not informed of. Any questions if you experience problems with it, just holler and i will try to answer as best as I can. good luck and feel better.

Well wishes sent your way and many blessings to you

Rebecca, I'm so sorry you are having such a difficult time with this doc. I would be upset as well seeing another physician than who I expected to see without some explanation given to me. I think when a person is ill and is seeking to not only get help & answers (dx) from physician, it can make you feel like your in a whirlwind and not know which end is up or down or what to believe. My suggestion to you is step back for a few days and take a breather and rest your mind with things then you'll be more refreshed. Then seek out the doctors who deal with dysautonomia & eds only and see them if possible for a diagnosis. At least you'll know one way or another and then after your diagnoses from a specialist who deals in these disorders you can go from there to provide the local physician or cardo the proof you need and information for your treatment provided from the specialist of dysautonomia or EDS. Personally, I would not see any cardio or expect treatment from them for something they do not know anything about, all it is going to do is frustrate you especially if they don't understand what they are treating in the first place and give you medication just to get you out the door. that's bad doctoring in my book. Plus I would have asked this person why do they think that you do not have this disorder and let them explain it to you the reasons why not. Believe me, I know what you going through and what you are feeling with this. I understand the expense of seeking outside specialist of your state but it maybe something you may have to do to get answers. Even if you spend extra to see a good one, think of the money you'll save by not wasting it on other docs who don't understand time after time. If you think you have EDS I would suggest seeing a genetics doc who deals with EDS or marfans. We have been where you are and it can be very frustrating until you find just the right one to help you. have you tried to call the NIH to see if they can advise you on a physicians name for these disorders for diagnosing? A knowledgable cardio can diagnose this blood pressure disorder as well via the TTT especially one who has a electrophysiologist on staff. I wish you all the best and take care.

Hi, good luck with your procedure and hope all goes well. When I had to test, I just followed the instructions of the prep as far as when to drink and what to drink to the letter even if I didn't feel like drinking something I did anyway, and I did not have a problem during that time before the colonoscopy & endoscopy with blood sugar which normally would be a problem with it dropping. I also bought some cambells soup broth (beef & chicken) and drank that (making sure it was strained of any solids that may be in there) and drank juices (clear), and water etc freq. ate jello (clear) & italian ice. I continually drank what was allowed and ate when allowed before the prepping began so I didn't start out depleted to begin with. Although, I would not advise drinking soda such as 7up or sprite. I made the mistake of doing that, drank it right after the prep. BIG mistake! even though the paperwork stated you could have it from the office.....too much carbination. I looked like I was going to pop and felt like too! The only time I experienced a blood pressure drop was during the procedure due to anesthesia given but that always happens to me. They just pushed IV fluids. Good luck and well wishes sent your way. As far as your age, although I understand but try not to let that bother you, our daughter is 24 and has had several of these things due to UC, due up again this next month so you are definetly not alone. Its better to get it checked out and make sure you're alright.

Hi Rebecca, from what I've read and learned (unless what I've read it off base) MVP is a structure problem and different than dysautonomia conditions, although a portion of people with MVP have a dysautonomia condition or the other way around....about 40% from what I've read. I did come across some support sites that stated it is the same on the internet but I would do more reading on the medical sites to be sure of this. Is this what your physician told you? If this fact is so, I've learned something new today. And MVP certainly does exist......Otherwise they wouldn't suggest antiobiotics for dental work etc if it was a not real.

Hi, Go with your feelings, children can have adult illnesses as well. mine had migraines at about the age of 5. plus there are children even babies that can have tummy disorders such as crohns disease. Hopefully it is nothing serious but I would get it checked out before she unknownly considers it normal and stops complaining and just tolerates it as her normal state. good luck and hope she feels better soon.

Wow, I have never heard of such a thing. That IS scary! maybe seek out another opinion (or two/three) from another facility and physicians regarding your health before doing such a procedure especially since you've read possible bleek outcome from it. I don't blame you for not wanting to do this. The only restart I've ever heard of is using medicine (via IV) or shocking the heart via paddles to stop extremely rapid heart beats that get out of control to put the heart rate back into a normal rhythm.. Best wishes sent your way and hope you find answers soon better suiting your health.

Hi Susan, All three of us in our family take midodrine. We have experience NO ill side effects from it and it is helping us function better. The only thing 2 of us noted is in the beginning of taking it is sort of what I describe as chills. We experienced a tingling feeling in the scalp and sometimes all over but it was temporary and only in the beginning of taking it. We like midodrine because it has a 4 hour life in the system, so we can control when to take it as needed depending on how we are feeling or what the heart rate & bp are doing at that particular time. And, yes probably your doc is just going to monitor what your bp is doing after you take via bp cuff I would imagine. good luck with your appt.

i was told by a navy corpsman that i was passing out continuously because of impounded earwax! yeah right. i've heard a lot of them. oh and i forgot to mention before that i have never used drugs. so that doc is totally wrong. atleast i am sure in many cases. dionna, Wow, that's interesting......I've heard a lot of strange ones as well over 20 years as a military wife. Our complex health issues were too much for most that we dealt with while in the military and physicians we saw then were constantly changing, goes along with the territory but it didn't make things any easier for a complex patient. You would find a good one and then he/she would get orders out so it was very difficult to establish a good patient doctor relationship to begin to get any answers to complex problems. They tried to help though. I never had one suggest drug testing though, I probably would have blown my stack on that one if they had. That's terrible you experienced that type of treatment. For us as a EDS patient, we were told at hopkins that our orthostatic problems/tachycardia we experienced goes along with the EDS in some EDSers due to laxity in the vessels & poor circulation. It makes me wonder if that is why Midodrine seems to help us function a little better. There are different opinions on this theory I've heard from different physicians myself. Although it makes sense, who knows the true root cause...It seems there are so many of different causes out there for this ailment.