briarrose

Vanderbilt is doing a study http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4787

Here is a great reference for you. This book can be down loaded for free and explains many things. Reading this will explain the different kinds of Dysautonomia. http://www.ndrf.org/Reference.htm

I believe it can also cause a spike in pressure so it's definitely something to consult a doctor about. I think the point here is that if you have Raynaud's so severely that it causes ulcers on your extremities there is now possible help. Kind of like some of our Orphan drugs.

I've posted this topic a few times as I've had a number of varying problems. At times I have twitching in my face or eye, more annoying than anything. I've had visual disturbances that turned out to be painless migraines, mainly just aura. I also have normal migraines with pain I've been having blurring of my vision of recent again and my primary sent me to be examined by the ophtamologist and the eye doc told me that my eyes look good and tossed me back to the doc. I do have periods of low blood pressure and I'm sure that has a huge effect on my vision. But I wish someone would figure out what's really going on instead of guessing. I would rather be told that they don't know instead of taking stabs in the dark.

Viagra Fights Blood Vessel Disorder http://news.yahoo.com/s/hsn/20051108/hl_hs...HNlYwN5bmNhdA-- Viagra reverses symptoms of Raynaud's http://news.yahoo.com/s/nm/20051107/hl_nm/...HNlYwN5bmNhdA--

here's the website http://today.reuters.com/news/newsArticleS...TRS&srch=viagra

I live on the West Coast and I'm sorry to say that I've looked from far upper North to lower South and no luck here. I fly to Ohio to see Dr. Grubb. sorry

This sounds like a great break through. Thank you for posting this information.

Ernie I'm so sorry that this is happening to you. You have been through so many frustrating things. All I can say is that you have had enough life learning events for 100 people I wish I knew the Canadian health system well enough to advise you on what to do. If I was a carpenter I would come build you a permanent one Hang in there and hopefully something good will happen in all of this. Be persistant and keep your chin up. Sincerely steph

American Dysautonomia Institute http://www.adiwebsite.org/index2.html

Morgan I'm so glad that you're back home with us My recommendation based on everything you've written on this post, please seek a doctor's appointment with one of the leading Dysautonomia guys. Preferably Dr. Grubb but if you can't get in then there is Dr. Low, Dr. Robertson or Dr. Goldstein. The four top names! Although I think that you might have to make it in for a research study for some of the others because they don't just see patients I'm saying this because they will be able to make heads or tails out of all your tests. It's funny but I think that many doctor's order tests that and they are unable to decipher the results to explain symptoms. I think that you'll need to see one of the leading specialists to help! There's my 2 cents Anyway so glad to see you posting. Steph

Welcome I'm sorry to hear that you've been dealing with this since you were 15. I hear you on being reliant on all the medications. I remember when I was only reliant on 1 medication, my synthroid and when they put me on a beta blocker I told them I was only taking it for a couple of months because I didn't want to be stuck on meds the rest of my life. Well obviously I'm on many meds and I would never stop taking my beta blocker as my tachycardia gets to bad and then I have near syncopal episodes. We do want we have to do to have a functional life. I know what the tremors are like and sometimes I have them worse on one side vs the other so I have to switch hands to drink. I'm glad you found us! steph

I don't know of any publishers but I would love to read your book. Congratulations on your success. steph

Thank you for this information especially for the new people. We've had this discussion before and I know of one person that said he had osteopenia within a year of starting Florinef. My primary promised that he would do a bone density test on me within a year of starting on the Florinef, it's now been over 3 years and no test After I herniated my back last month I was told that I have degenerative disc disease and arthritis in my spine. I finally took it upon myself to see a rheumatologist this past week. He said the pain in my hand was tendonitis. The rest of my bone/joint/muscle pain, he was thinking possible fibromyalgia but I didn't quite meet the criteria; thank goodness I don't need that diagnosis on my record especially here on the West Coast where doctor's think that things like Chronic Fatigue syndrome and fibromyalgia are a Hooey diagnosis. He sent me for an x-ray to look at my bones and I'm waiting to hear back.

Melissa Sorry your incident lead to such a disaster at the ER. I agree with what the others said, Use your Wheelchair Think about writing whoever is in charge of the ER & the ER Doctor's (not usually one in the same.) It's times like this that they need education on Dysautonomia and what THEIR Missing! I hope you're feeling better soon! steph

It's been many years but I have experienced this problem. My scalp was so tender that I couldn't bare to brush my hair or even touch my head. I never talked to the doctor about this one, didn't want to get the infamous fibromyalgia diagnosis. I don't ever remember experiencing my nails hurting. Sometimes my teeth ache, either the uppers or the lowers. They'll just start aching and it goes away as mysteriously as it came. I agree with what Sophia said about mom brushing the hair and how bad it hurt no matter how careful she was being. And my head would ache from those tight ponytails.

Persephone First of all I have the shakes, I call them tremors. I often have them worse on my right (dominate hand.) Sometimes so visibly bad that people ask if I'm ok. I think this is what they call Parkonsonian's that is associated with POTS. Stress usually makes this symptom worse for me. Hang in there. I know those are hollow words and easy to write but this is just a bad day or a bad week for you and it will pass. You will find a way to overcome your obstacles and avail the situation. College is one of the most difficult things a person can experience. It's not like changing a job your stuck there for the duration or you forfit much time and money. I see you have a quote posted at the bottom of your page - Intelligence can leap the hurdles which nature has set before us. ~Livy You are being presented with your hurdles and I know you will heed this important quote and find a way to overcome your hurdles. Call the disabilities office and speak with the person in charge and get that situation taken care of. It's sounds like a huge burden, stressful and waste of daily time. Make sure you're accomodations are going to be taken a little more seriously and stress your time lines. If you aren't getting help from the person in charge of that office, climb the ladder and go to who ever is in charge of the disability department. Don't keep worrying about what your tutors think, just explain the situation and concentrate on your studies, not what others think. This is a waste of your precious energy. This sounds a little cold but after years of experience trust me it's the right thing. You probably won't know your tutors 10 years from now. Call the Cardiologist office and ask where your script is. Maybe it was lost or he completely forgot. There could be a simple explanation. Find a few minutes to yourself everyday and do something that you enjoy, whether it's reading a book (Not schoolwork), taking a bath, sitting for tea with a friend. Call your family and see if your mom can come for a visit or someone else you know. I know college is challenging, I have 3 kids in college and I've heard about their struggles and their fortunately relatively healthy. Keep your chin up and were all pulling for you. Good luck steph

Thanks for the heads up! I sent in my response to the show again

Hi I know that I'm one of two "Steph's" that get the Procrit/Epogen injection. My injections are normally weekly. Yes, I have to have a Hematocrit drawn before each injection. Dr. Grubb likes to see POTS patients with a Hematocrit of 45-50 which is well above normal. I've talked to my primary here in my home state and our goal is a HCT of 45, I'm too nervous to go to 50. So I get my blood drawn and they call me back the same day and tell me whether or not I need to come in for a shot. I started my injections 2 years ago next month (November 2003.) However for the first 3 months that I got the injection my blood count didn't increase at all. Fortunately I saw Dr. Grubb in Late Jan/Early Feb and he told me that I didn't have any iron left in my body, my iron stores were completely depleted and that Iron was necessary for Epogen to work. I had been on oral Iron every day for 1-2 years before that but it didn't improve my levels. They finally started me on IV Iron every week, after several months they spaced out my IV Iron to 2 weeks and now I get it every 3rd week. Epogen is a very, very painful injection that hurts from my hand to my shoulder. Dr. Grubb prescribed EMLA cream to numb my arm 30 mins before my injection and let me tell you that it was the best thing The combination of Epogen & Iron have been quite incredible to my health! I was so fatigued that I was barely able to function and I was living minute to minute or day to day before and now I have a lot of my energy back. I'm not 100% but I'm extremely happy about the improvement! This was something that worked very well for me. If you have any other questions, please feel free to ask. thx Steph

Thank you for your question & answer segment it was nicely put and very informing. I'm glad that you were glad to get into Vanderbilt and find help in meds and answers. I didn't necessarily agree with #3 though. Hypovolemia can't always be cured by just drinking fluids, increasing salt & taking florinef. Florinef just helps to retain fluids but not always in severe cases. There are times when IV fluids are necessary, this is one of the main things I don't like about Vanderbilts way of thinking. I attended one of Dr. Robertson's Grand Rounds and he actually discouraged all the doctor's who thought about giving IV fluids and told them that they needed to offer their patients a glass of water instead. I know Vanderbilt has done a lot of research in the way of POTS and is highly accepted by many and I personally liked Dr. Robertson he seemed like a very nice man. But I think that some of these research facilities like Mayo, Vanderbilt & MAYBE even NIH don't have a clue what happens long term to POTS patients because I've never heard of them being studied over long periods of time in their change of symptoms. AND I think that sometimes these facilities are pushing a medication and skewing the outcome by too selective of a "hand-picking." (Picking only patients that will succeed with their study and then declaring it good for all of us!) Thx again for sharing your info to everyone

A couple of years before the tachycardia started I was having horrible hair loss, the doctor tried to tell me that it was normal for us to lose so much hair a day. I tried to explain that it was coming out in handfuls during my shower. She never listened and eventually the problem subsided.

Dave You're a very supportive and loving husband. I know that we go through a lot with our symptoms but I really can't imagine what you're going through as we often don't here from spouses or family and their own struggles and frustrations. Thank you for the letter explaining everything. I know this is a hard time for the both of you and if there's anything either of you need, just let us know please. Sincerely Steph

Congratulations Ling on such wonderful news!

I was going to recommend Dr. Bell also. He is suppose to be one of the best and he worked closely with Dr. (?brain fart, sorry but one of the original POTS docs that past away a few years ago.) The two of them made some interesting connections about POTS & CFS. FYI I had an appt the summer of 2002 and they expected a large sum of cash upfront, you might want to call and ask what their current policy is.

I'm not going to comment too much here but you should consult with your Doctor about anything like Chest Pain and see what he/she thinks. You might want to read about about the misconceptions of women and heart attacks, heart disease in women is all to real and completely underrated! http://www.medicinenet.com/script/main/art...rticlekey=19561 and if you would like to learn more about women and heart disease here are a few good websites http://www.americanheart.org/presenter.jht...ntifier=1200011 http://www.womenheart.org/