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My daughter has both and I have MVP. Both of us have POTS and EDS Type III. I have had all of the symptoms you list, but I am better. The bed, for almost ten years, seemed to be my best friend. The heart valves are almost never the cause of POTS symptoms, and are nothing to worry about. We all need a caring doctor that is dedicated to helping us get better. We all need hope!! Bless you! My heart goes out to you and you can get better and your family loves you now and when you get better. POTS can be soooo hard to live with, but prayers can be our HOPE! My prayers go out to you.

What a nice person!!! Bless you!!!

Mvp is a marker for Dysautonomia. If you have Ehlers-danlos III, you might have a minor MVP. As you know TMJ, carpel tunnel, lax ligaments in the upper arm, that can be painful, all the flexible joints and etc. goes along with this dys., and of course we know how awful the blood pressure can be, the nausea and dizziness, pain & weakness in the legs, fatigue that can not be understood, unless you have it, sleep problems, GI upsets, migraines and the heat intolerance. Too much time laying in bed or on the couch, missing out on our precious family, watching the world go around almost without us. I am sooo grateful that there is people in the world that can keep it going. Oh my!!! How can we stand this stuff???? That felt good to vent!!! It was hard to stop, and I am sure that I missed something!!! Oh! This is only one type!!! I pray for a cure for every type of Dysautonomia. Love & Prayers, Mary

Never go! Just wait it out. Less stress to be at home.

Lovaza 4 times a day for 3 years has helped the heart and depression. It improves health in general and is a step in the right direction. I feel that trying to go in a positive way, can help us have some control over our health.

Welcome to this wonderful place, that is soo warm and caring. I care very much and you will find that many of these Dinet members know just what to say to help. Hope you find answers soon. Mary

Dr.Grubb's book explains the difference. " The Fainting Phenomenon" Hope this can help!

Yes!!! It is back after many years of it being gone. I need a tune up, but nothing is working so far. I am glade you asked this question. Hope you get relief soon. Mary

Welcome!! Please feel free to ask me anything. Not being able to find a pulse is really common around here, it is there but hard to find. In the past, many nurses could not even get my correct blood pressure. Your blood pressure is exactly like mine used to be. You need one of the few doctors that are willing to take us on. Dinet has a list. Try not to worry, you will get better, it takes a lot of patients and determination. Love, Mary

Good news! Looking forward to you getting better! Mary

He also told me that he had tried to get a doctor to help him, but no one was interested. There will be a doctor at the Kirklin Clinic UAB as soon as they find a really good team to take over the autonomic lab that Dr. Coghlan developed. I get letters on occasion from UAB with an update on their progress.

I saw Dr. Grubb this summer and he speaks highly of Bev. He was going to introduce her, but she was taking a test for her PHD. They will help you !! It takes sooo much patients and work, but getting better is in your furture!! They really do care. This illness has been with me for many years. My daughter was three, when laying in bed was my only relief. She spent most of her time playing or laying in my room. Dinet is the place to be. Welcome and feel free to ask me anything. Blessings, Mary

The Casper look has been with me all my life and above my upper lip always looks like the" I've got milk" commercials.

The once a week evening out, I put on the compression knee highs and after about an hour, dizziness overtook me and I could not turn my head or barely walk and it lasted for several hours. They make my legs very hot and itchy. I was told to use powder and rubber gloves to pull them on and I need help to pull them off. In my cold house they are ok. We keep our house about 66 or less year round. Cleveland Clinic told me to wear the knee high type. Many years ago I was told that compression on the abdomen was the best. We can just guess what way will be best next!! Hope you find something that works for you!!

Bella, You are such a delightful person. It is great to know you where treated so good. I hope and pray that they can make your suffering go away. Love, Mary

No hair loss, for me, because of Klonopin. Exercise is the very best medicine for hair loss, but we know that is very difficult for a lot of us. I care, Mary

I have been blessed with three children and only one has it, my only daughter.

I have been taking Konopin for about 18 years. It was the med. that could help me sleep and stop those awful muscle jerks. They would jerk so hard that it would be painful and keep me from falling asleep. Don't worry about taking it, just be sure you take the same dose everyday. My dose has not been changed and it still does wonders after all these years. Hope this is helpful. Mary

I was first sick at age 27 (not feeling well and fatigued) and got much worse at age 38 ( in the bed with nausea and dizziness, that did not get better for many years) and diagnosed age 43. Life as I knew it, ended April 11, 1987, in the middle of my exercise class. The room had been too hot for several days before I became very ill. So I count about 15 years. Oh!! That brought back some tough memories. Love all of you, Mary

Side effect too severe.

I think about this everyday!! Hope you can get it done!! Dr. Grubb with Doctor Oz!! Somebody will get through. There is a new book, by Lynn Fox Adams, that would make a big impact.

Love and blessings to you, Mary

Coffee would make me so sick, for at least ten or more years, but now about two to three cups, through out the day, with food is ok. That is because of the improvement in my dys. I still have lots of dizziness. Standing, light house work, and trying to exercise makes me sick. I spend my days in and out of a recliner. I do my best to stay out of the bed in the day time. Rest and as much movement as I can do, is my best medicine. I have so many migraines, but not from caffeine. Hormones cause migraines for days in a row and heat does the same. Mary

Dr. Grubb has my prayers always!! He recently told me about his wife and when I heard the news about Kennedy, I was concerned about the news taking a toll. As humans, hope is our driving force. I am so pleased to hear about your great visit with him. Bless Dr. Grubb for all he has done for us. Praying for a miracle!!! Mary

Dr. Grubb told me that it had been proven that EDS causes dys. Most of you already know this, but I did not know it had been proven The tilt at CC proved I still have a problem. I am still dizzy and sick after any activity. Standing will always be a problem for me even though my blood pressure is much better. I hope you continue to improve. If you have EDS you will always be at risk for a backslide. We can never forget the things that make us worse. It is great that you have found a way to cope and feel better!!! Mary