briarrose

I feel bad for both you and his other patient. Sounds like he hasn't done much for her either. Does he think that it's magically going to go away especially if your in that much pain. He should at least examine you or send you to somebody who will. I'm not sure what an extra dose of beta blocker and florinef is going to do for back pain. I'm sorry you have to deal with this. I hope you get help for it soon as back pain can be from so many different things and the pain can get out of control quickly. Good luck steph

Welcome to the forum!

I have to have the skin test every year. I've never had a reaction, it's such a small injection. I'm also on Florinef.

The tilt table is going to be one of the most important test for you probably. But Ernie had an excellent point by attaching all of them for you.

Actually depending on the lab that ran those blood tests, their reference ranges can very. His D-dimer is positive but many people have positive D-dimer's, it's inconclusive. The hospital where I work, any Troponin >0.10 is positive. Troponin is a test commonly used to check for myocardial infarction. Other things are sepsis, hypovolemia, atrial fibrillation, congestive heart failure, pulmonary embolism, myocarditis, myocardial contusion, and renal failure, can be associated with an increase in troponin level You said he has an enlarged heart, there can be many reasons for this - Coronary artery disease, Cardiac Ischemia, Myocarditis, Heart valve disease, Previous heart attack, thyroid disease, Obesity, Hypertension, Marfan syndrome, excessive iron build up, severe anemia, abnormal protein build up. Sounds like he really does need help, I hope some people from Ohio are able to give good suggestions. I don't know if you guys have a state medical assistance program. Does he qualify for food stamps? How is he able to buy his prescriptions? Does he have any family that can help?

Once again in my opinion, there aren't any doctor's that have gone to school to become an autonomic specialist. They don't teach it! The Autonomic doctor's in America are either researchers or have decided to take on autonomic issues. Ask any of the docs and they will tell you there is no money to be had in taking on these kinds of patients. There are only a handful of autonomic doctor's in the World. Based on that, Dr. Grubb is the best of his kind and people do seek him out from all over the World. Dr. Streeten was a good friend of Dr. Grubbs. Dr. Streeten also worked with Dr. Bell (a chronic fatigue specialist) http://home.tampabay.rr.com/lymecfs/hypovolemia.htm Dr. Bell http://www.anapsid.org/cnd/diagnosis/oi.html Figuring it all out http://www.ncf-net.org/forum/orthostatic98.htm CFIDS New Mechanism Found, Treatment Tried http://www.ncchem.com/cfids_new.htm other good articles http://www.ahummingbirdsguide.com/wbell.htm Israel is the place where Dysautonomia is the most heard of because for some reason it's said to be inflicted on high numbers of Jews, even with that they don't seem to be advertising any top Autonomic Guru's.

In my personal opinion he's the most knowledgable, compassionate, respected doctor there is. He knows more about Autonomic problems then anyone that I've met so far. I trust him more than some of the researchers, just because he sees Dysautonomia long term and researchers see people for a fragment of time of their illness. Well anyone that has had Dysautonomia for at least a couple of years knows how this illness changes (symptoms.) Dr. Grubb has been nominated top doc in the U.S. more than once. He's done more for my autonomic problems in one visit then a handful of doctor's did in over a years time! He's a gift! Any other questions? Steph

I can't wear mascara anymore. I've tried several different brands but it blurs my eyes too, But the worst thing is that it causes me to have eye infections especially styes. Since I stopped using mascara I don't get eye infections anymore. As for standing at the mirror, I usually sit on the floor and put my make up on or bring a chair into the bathroom to blow dry my hair and put make up on.

Jen It's tough to answer your question because looking back at the past 10 years before the tachycardia I had problems with joint pain and fatigue. After getting a flu shot at the end of October 2001 I started having flu like symptoms which continued for 3 weeks before ending up in the hospital with severe tachycardia. They waited a month to start me on beta blockers because they thought it would just pass. It was several months later that I started to have an increase in different symptoms. After 4 years I continue to have new symptoms some very severe BUT I found a good autonomic doctor who has me on great medications to help control my symptoms. It's different for everyone so there is no magical answer to your question, I'm sorry. Take care & just be grateful that you have a diagnosis and your not being told that your some psych nut. Steph

Does this sound correct? Dotson, Rose M MD - Regional Neurology Ctr SC (414) 354-8700 5678 W Brown Deer Rd Ste 200, Milwaukee, WI

I'm with TeaRose on this one! Sorry Stacey for such bad luck but you might be better off from the start by finding someone responsible.

I bought there Chronic illness package 1 1/2 years ago and posted the things at work. I also have 2 of the T-shirts with the Chronic Illness sayings on the back. I've written all of this out and posted it some time ago Glad you like the site too.

This could be exciting news. http://news.yahoo.com/s/ap/20060224/ap_on_...HE0BHNlYwN0bWE- Maybe someday they will use these "chips" to find the cause of POTS! Are these the same type of chips that thye are using to find CFS http://www.cfids.org/advocacy/c-act_11142002.asp

Sally That was a great story by Dr. Grubb but this is my other favorite written by him http://www.annals.org/cgi/content/full/127/4/331

FlyingMonkey Solution - If you scroll back and forth like I do while writing something so you can reread it, I too have lost my post so before you scroll, highlight and copy your post, that way if something happens to it you can just paste it back in place. Steph

Definitely! I have to make notes as I go and constant scrolling back & forth. When I was well this was never an issue! AND there are times (sometimes hours, days or weeks) that I don't understand what I'm reading so I skip the board all together because it's frustrating.

Headaches are listed as a side effect of Florinef. Hopefully your body will get use to it. Talk to your doc maybe he'll reduce the dosage a little and build up slowly. As far as your spouses friend (the nurse) is concerned, I don't care if it was a doctor telling me they think I should take something else, unless it was someone that has actually experienced this illness or was trained to administer specifically for POTS patients! I work in one of the largest ED's in my state and let me tell you that most of the staff have never heard of some of the medications that we use, so none of them are knowledgable and I wouldn't trust their thoughts or opinions on this illness. If that sounded harsh it was, I just hate people giving opinions when they can't even begin to comprehend this illness. This isn't like Diabetes, MS, COPD, CHF or even like having a heart attack. Dysautonomia is in a category all it's own and I just hope someday real soon that people understand it and at least recognize the word "Dysautonomia" so they have a little understanding!

If your urinary tract infection is so bad that you can't urinate then you probably shouldn't wait until tomorrow as the infection can get much worse. Did you talk to the nurse about this?

Caffeine is for those people who suffer low blood pressure. It's suppose to act as a vasoconstrictor and help increase blood pressure. Salt is to help retain fluids. And Sudafed is a BIG NO...NO! When will this Country get educated about Dysautonomia?????

Here's some web sites http://www.hypermobility.org/ http://ghr.nlm.nih.gov/condition=ehlersdan...BF38F41ED26F876 http://arthritis.about.com/cs/jh/a/hypermobfms.htm http://www.ednf.org/ http://www.nlm.nih.gov/medlineplus/ehlersdanlossyndrome.html http://www.emedicine.com/derm/topic696.htm

It might be worth a call to your GI docs office and request that they give you something for the nausea. I think most of the POTS patients take Zofran, very expensive but worth it! I also take Protonix for my stomach and it's been a life saver but I suffer from GERD. Good luck & advocate strongly for yourself! Steph

Julia I might be wrong but the way I'm reading your lab value is less than 2.0 is the reference range, so 0.2 is great. If in doubt you could probably even call the nurse and ask her about this. I'm sorry you've been feeling so crappy. You shouldn't stress about being a heart attack waiting to happen as this just stresses your heart & body unnecessarily. Think good thoughts and try to stay on an upswing of positive I know easier said than done but if in doubt, watch the movie Patch Adams If your terribly afraid and need reassurance, I would put a call into your cardiologist and tell them what your concerns are. That way they can reassure you that the tachy isn't much of an issue for a heart attack. My Aunt was running nearly 300 bpm (PSVT) before her 2nd ablation. Take care & hang in there, you're not alone Steph

When I had my TTT the docs told me that it didn't matter what medications I was taking because if the medication is actually working and your HR doesn't increase on tilt then on the second tilt they administer isoproternol. here is a link on tilt http://www.heartsite.com/html/tilt_test.html As for symptoms, they can come as one or a dozen at once or individually. You might not be doing anything or you might be doing something to aggravate them. It would be extremely helpful if you go back and look as past posts as these things recur all the time and just know that you are normal.

Sometimes this can be related to seizures. http://www.epilepsy.com/epilepsy/seizure_myoclonic.html What else could it be? As mentioned, some episodes of myoclonus are normal. Some myoclonic seizures occur in reflex epilepsies, triggered by flashing lights or other things in the environment.

Hayley As for feeling drunk, many people have complained of that symptom and I don't think any of them have been diagnosed with Conversion disorder. See for yourself by doing a search on the top of this page and simply put in the word "Drunk." You know yourself better than anyone and if you think you have some kind of Dysautonomia find a doctor that knows enough to support you! Steph