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About Maxine

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  1. Generally, there's somehting else wrong with the heart...like a valve problem, or other heart deformity. There's usually something more to it. I heard people with EDS shouldn't have a tilt table done, as they can code during the test. Delayed blood pooling due to the poor vascular tone. Sometimes BP drops are sudden, and the heart doesn't have time to compensate. Meaning that when the sudden drop in BP occurs, because the of the delay, it's not expected like the typical BP drops in primary POTS without EDS. I won't even look at the article, as it's probably not accurate at all. Maxine :0
  2. Thanks so much for your replies and support. Definately dealing with a lot, and I pray the my quality of life improves when I have surgery. I don't have much of a choice, but his surgery isn't a perfect surgery, and I pray complications do not happen, or they aren't very significant. I'm trying to work with the Cleveland Clinic on understanding the seriousness on these spine/chiari related conditions related to EDS. They're pretty tough to deal with, but I'm trying to stay positive. I'm well informed on EDS, and have educated myslef a great deal on cervical cranial instability/cranial settli
  3. This is a note I put in the EDS neck surgery facebook page. I went to Bethesda Maryland again on March 30th to see Dr. Henderson, and also saw Dr. Clair Francomano on April 1st. I'm sorry, I don't come here much, and I feel bad for not being here to offer support. I'm mostly in the FB support pages, and rarely come here anymore. If anyone would like to contact me on why....send me and e-mail. NOTE FORM FACEBOOK...... Well, we made it home OK. Had a really bad POTS spell on the way home----pounding heart while attempting the first rest stop....all the while the sleet was coming down in shee
  4. By the way, "the inner ear" is usually what a "clueless" doctor will diagnose when they don't know what the heck they're doing. They cannot make that diagnosis unless an ENT (ear nose throat)doctor evaluates them. Or the doctor has ruled out other causes. When they do no testing,neuro exam, and slap a possible inner ear problem on you...it's a big red flag that you're being blown off. AGAIN....SO SORRY YOU HAD TO DEAL WITH THAT KIND OF TREATMENT. Julie :0)
  5. Yes subluxating the vertebrae can cause vertebral artery compression, and cause the symptoms you daughter is having. You daughter received, "below the standard fo care" at the hospital you went to. In light of her also having EDS, she should have definately been evaluated further by a neurologist or neurosurgeon, and they should have done and MRA, MRI to see if her vertebral artery is compressed. If she has a history of neck instability you need to push the issue more with her doctors, and make them do their job. You and your daughter have the right to have decent medical care! I'm sorry yo
  6. It has been explained to me that people with EDS who have poor vascular tone have blood pooling, and in turn this causes orthostatic intolerance. You do not have to have "vascular EDS" to have poor vascular tone. I have severe blood pooling, and delayed drops in BP. When my BP drops it's very low! Gravity is not my friend! Maxine :0)
  7. Thank you---- Well, it would be nice if the POTS was helped, but I have to remember POTs is part of the EDS also. I think the surgery is to stop the progression, and to save my life actually. This is not a great thing to have, and I know you know this, but I often find myself being judged because I look so normal. I'll tell you somehting that isn't helping........................menopause! The hot flashes make me feel like I'm melting, and I can't do anything!!!! Thanks for replying, that means a lot! HUGS, Maxine :0)
  8. Lieze, Although I haven't been on here for a while, I wanted to skim a few postings, and yours caught my eye. I know this horrible feeling of anxiety, and feel my body react to everything----even a loud TV--(which isn't really loud, but seems like it to me). This can make everything feel worse. The doctor owes it to you to help find out why you're so anxious. This is a symptom of an overactive sympathetic nervous system. A malfunction of your ANS. (autonomic nervous system). All kinds of things can cause this--------------even Celiac disease. http://www.celiac.com/articles/1106/1/Celiac-D
  9. First, I'm so sorry I haven't posted here in a while. I've been more cought up on facebook with EDS group, and EDS neck surgery group, and also supporting a good friend with her severe spine instability. I went to the EDNF conference in Baltimore in Baltimore Md., and also saw a surgeon at before the conference in Bethesda, Md. It was a great time putting the faces with the names, and finding out how much we have in common. Some people with EDS didn't have any POTS symptoms. I found this interesting, if not a bit confusing. Anyway, the setback I'm having are both POTS and spine related.
  10. Sorry, haven't been on here in a while-----------I have a lot going on with POTS, EDS, and spine issues/instability, and I have already made an attempt to type it all out, and it ended up being deleted by accident when I had too many pages going at once. I had a question about omega 3s and vitamin D. I know I have posted about vitamin D before, but I'm doing it again. Do any of you notice more POTS symptoms/irregular heart beats when taking omega 3 or vitamin D? IT seems even the 85mg aspirin seems to cause skipped heart beats. When I went to my PCP he did some blood work on lipids along w
  11. I hope they get down to the bottom of your lab work soon. You have a right to know what's going on. Yes, hypermobility/EDS is associated with GI problems. 3/4 of my colon is diverticuli from weak bowel walls due to the EDS. The CLeveland Clinic is clueless about EDS/connective tissue disorders. Check this out; http://www.clevelandclinicmeded.com/live/courses/2010/marfan10/default.asp Pretty ironic, isn't it. Sending you a HUG, Maxine :0)
  12. Mary P, I'm so sorry you have been dealing with all of this. I truly know your pain, and the fear of the unknown. The Cleveland Clinc has agreed to do the colonoscopy without sedation. It will take longer, as the procedure will need a "special touch". Dr. Burke was wonderful with me on the phone, and she said she had all of my records in front of her. She was familiar with all the autonomic nervous system issues, and in fact knows we also have a different response to pain because of this. I'm going to be examined before this is done because I called about a lumpy area on the left lower abd
  13. Hi...... Tomorrow I start on regular dose wellbutrin 100mgs split in half twice a day. I have been on 100mg SR for 9 years........any experience going from extended release to regular dose twice a day? I have trouble digesting the casing on the extended release, as it remains intact. I'm certain it gets caught in my diverticuli pouches. I have excessive diverticuli. I'm hoping this helps my digestive problems somewhat. THANKS! Maxine :0)
  14. Thanks , I may get an ultrasound before the test. Reason? I feel a tube shaped hard lump on lower left abdomen. SCARY! My brother died from colon cancer in Feb. 2009. We don't know what kind of cancer my mother had because it was found so late. I think most people know my family history here. Her brother died two weeks after she did, and we know he died from colon cancer. No other members in the family had colon cancer. My Aunt had brain cancer in her 60s. She lived 10 years after the surgery removing most of the tumor. This lump almost feel like a twisted bowel. I'm always consit
  15. Well, I've been having gut issues for a very long time. Too be more specific, CONSTIPATION"! Sorry folks, just plain tired of dealing with the misery of it. Many people with POTS, EDS, or both suffer with this relentlessly. I'm sure the spine instability that has caused neuro problems has a role in this also. One thing I have thought about is diet. I'm careful to stay away from foods that mess with my diverticuli since I have 3/4 of colon covered with it, along with a very large one in my small intestine. When I went for my regular checkup with Dr. Grubb I mentioned changing my Wellbutr
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