briarrose

I agree with most of you that they are missing something. However I believe that this is an Autonomic issue and not specifically Cardiology. On that note, I've only been able to find cardiologists to treat as all of the Neuro docs that I've met up to this point don't want to touch this disorder.

As for tremors being thyroid. I know that it can be one symptom of a thyroid disorder but for me it's not thyroid. I experience my worst tremors with bursts of adrenaline or exhaustion.

I liked Dr. Grubb's explanation of Dysautonomia; let me see if I can remember how it goes, my interpretation might be a little crude though Think of your brain as a thermostat and your body as the furnace. You set the thermostat at a certain temperature say 70 and you expect your furnace to turn on to accommodate you, however the furnace doesn't always fire up. So the message is getting lost somewhere between your brain & your body (this usually takes place in the Thalamus & hypothalamus.) So where is the signal being lost the thermostat or the furnace, thus in lies the problem.

I tried to find you guys some websites not sure about the credibility of the first one though

http://www.incrediblehorizons.com/balance-...%20function.htm

This might be better - Hypothalamus

http://biology.about.com/library/organs/brain/blhypothal.htm

Thalamus

http://www.architecture-mind.com/thalamus.htm

To get a better explanation of all of this I would recommend downloading the book that is offered for free download from the NDRF ?For Patients with Dysautonomia.?

http://www.ndrf.org/Reference.htm

Do you have a copy of your medical records and the results from the TTT? Did they use medication on you when they tilted you and what was the total length of time that you were tilted? OH and what meds were you on at the time of the tilt?

Steph

At this point where I was having severe low blood pressure and unable to tolerate medications, Dr. Grubb recommended the IV Iron and Epogen injections. It took a couple of months before I felt better but today it seems like a different life time. That's not to say that I don't get fatigued or that warn down feeling. I also still battle low blood pressure but I can compensate better now.

You may want to call Dr. Grubb's office and ask them about pursuing this next.

New Orthostatic Hypotension Treatment Reduces Symptoms Without Causing High Blood Pressure

For release: Tuesday, April 11, 2006

http://www.ninds.nih.gov/news_and_events/n...hypotension.htm

To Print: Click your browser's PRINT button.

NOTE: To view the article with Web enhancements, go to:

http://www.medscape.com/viewarticle/522421

________________________________________

The Postural Tachycardia Syndrome

A Concise Guide to Diagnosis and Management

Blair P. Grubb, M.D.; Yousuf Kanjwal, M.D.; Daniel J. Kosinski, M.D.

J Cardiovasc Electrophysiol. 2006;17(1):108-112. ?2006 Blackwell Publishing

Posted 02/07/2006

I'm going to try to make arrangements for a more comfortable area in the hospital, I'll get back to you in the next couple of days as the where.

And as for when lets plan on 3pm on Sunday April 30th, unless there are strong objections.

I look forward to meeting everyone

Steph

hmichel what time could you come that Sunday? Would 3pm be alright with everyone?

Steph

Your welcome.

I kind of took it that it was relaxation therapy.

McGrady, A., Bush, E.G., Grubb, B. Outcome of biofeedback assisted relaxation for neurocardiogenic syncope and headache: A clinical replication series. Applied Psychophysiology and Biofeedback, 22(1):63-72, 1997.

One other thing, maybe you could try contacting Ken Davis in Toledo, Ohio and asking him about it specifically. Isn't he the one that uses it?

Dr. Greene Bush co-authored an an article with A. McGrady, C, Kern-Buell, C., R. Devonshire, A. Clagget, and B. Grubb, titled Biofeedback-Assisted Relaxation Therapy in Neurocardiogenic Syncope: A Pilot Study in the journal Applied Psychophysiology and Biofeedback, 2003, 28, 183-192.

http://www.intelihealth.com/IH/ihtIH/WSIHW...ml?d=dmtContent

Diagnosis and management of neurally mediated syncope and related conditions in adolescents

http://www.pediatricnetwork.org/medical/OI...tations/nmh.htm

Outcome of biofeedback-assisted relaxation for neurocardiogenic syncope and headache: a clinical replication series

http://www.meduohio.edu/depts/psych/profiles/mcgrady.html

http://www.umm.edu/altmed/ConsConditions/Faintingcc.html

http://www.daytondailynews.com/health/altm...Faintingcc.html

I decided to rename my previous topic discussion.

Mystery Diagnosis is looking for stories and you can call them at 1-800-947-1077. I called and left my name and number.

I hope some of you guys will take the time to try and get some attention. I feel horrible for the tens of thousands of people out there seeking out a diagnosis and probably be told that it's all in their head.

Good luck to you guys!

Sounds great as I'm off that weekend. Afternoon and evening are better for me health wise. My vote is for Sunday anytime around your appointment but can arrange Saturday too, just sometimes have kids things on that day but they haven't given me the schedule yet

Lets give the others in this area a chance to chime in

For those people that live near Portland, Oregon I would like to arrange a group get together. If anyone is interested please send me a message. I'm still working out details but thought maybe we could meet at Providence Portland Medical Center. How does this sound to the people in this area? Please let me know your thoughts and what works for you.

thx

Steph

I saw this episode yesterday at a friend's house and I was thinking that she definitely has more than MVP and it would be nice to point her this way

Nope, I've written my own. Sorry I can't be more help in that department but I'm trying

So since I've had so many problems over the past few months, some of them personal and some medical I've again felt the need to be proactive.

Mystery Diagnosis is looking for stories and you can call them at 1-800-947-1077.

I've spent the morning sending out letters to some of the following. I've also again called 2 of my local newspapers trying to get a reporter to call me back.

Primetime

20/20

http://abcnews.go.com/Reference/story?id=54216

Oprah Winfrey

https://www.oprah.com/plugger/templates/BeO...plugId=B2100004

Barbara Walters

http://abc.go.com/theview/hosts/walters.html

I hope some of you guys will take the time to try and get some attention. I feel horrible for the tens of thousands of people out there seeking out a diagnosis and probably be told that it's all in their head.

Good luck to you guys!

Boy was I shocked when I came across this article, maybe it's been posted before but you guys should check it out.

http://abcnews.healthology.com/printer_fri...dio_orthostatic

I've said this in many of my posts but I'm going to say it again

I suffered with extreme joint pain for over 10 years. I tried so many different kinds of drugs it was incredible, including every drug that's been listed on your post with the exception of Morphine.

I saw numerous rheumatologists, endocrinologist, neurologist, my primary, ect. I live in Oregon and even travelled to New YorK City to see a pain specialist there. None of them were able to help.

However, it was Dr. Grubb that figured out my joint/muscle/bone pain issues. He prescribed Neurontin for my pain issues and I have to tell you that I was Skeptical at best. I know Neurontin to be a anti-seizure medication and a pain medication that only works for diabetics. I really thought he was off base. Boy was I wrong! It's been the best medication that I've ever taken. I take such a low dosage that I don't have side effects and it's been the only thing that has helped the pain. It's better than Percocet, as that medication leaves you high feeling, tired and doesn't completely take the pain away.

My daughter was put on minocycline for her acne 6 weeks ago. So I don't know if it's a sad coincidence or just her time but 1 1/2 weeks ago she came into my bedroom after she had been taking a nap, she complained that she felt weird! She was dizzy and complaining that she could feel her heart racing in her throat. It turns out that her heart rate was 104, bp 150/91 and she had a horrible headache. These are symptoms that have been going on nearly every day. I took her to her pediatrician last friday and she will test her thyroid and she made her stop taking the minocycline right away to see if her symptoms fade. I gave her pediatrician information regarding POTS & Dysautonomia, she is very opened minded and willing to right a referral for her to go out of state for treatment. The doc was very honest in immediately saying they don't teach us about Dysautonomia in Medical school.

As for the stem cell research I'm all for it and would even like to volunteer to be a guinea pig.

Welcome!

Dysautonomia is a frustrating illness that leaves you with more questions than answers. There is a great section above the forum discussion topics entitled Frequently asked questions, you will find plenty of helpful information there.

You talked about your Propranolol making you feel better. It is actually one of the more commonly recommended beta blockers suggested for POTS and it's also helpful for migraines.

As for the parking structure or noise difficulties, they say that Dysautonomia patients become very sensitive or Overly stimulated to noise/light.

Your comments about your sleep pattern are not at all unusual for most of us. It's another frustrating symptom.

Driving - I struggled with this for sometime. I would find that I would suddenly get so tired that I would need to pull over immediately to take a nap. I had to start carrying a pillow and blanket in the back seat and I also refused to drive my kids any distance from home. I find myself getting motion sickness in the car but normally when I'm looking out a side window.

They suggest that you DO NOT take hot showers as this does exacerbate your symptoms. Try to take a warm shower or possibly bath.

It would probably benefit you greatly to do some searches here about things you mentioned as they've all been mentioned before and nothing you said was unusual.

good luck

steph

Dang I wish my cholesterol was that low. My highest level Triglycerites were near 400. Total cholesterol 285.

It's also good to remember that every lab is a little different and they state what the normal values are, it's not straight forward.

Claire

Welcome aboard, sounds like you found the right place

The level of testing you get done depends on symptoms, your docs & how much they know. There is a good recommended page here regarding that info.

Here is the true definition of Raynaud's - http://www.niams.nih.gov/hi/topics/raynaud/ar125fs.htm

My primary doctors did most of the appropriate tests and even gave me a diagnosis. I went to Dr. Grubb for treatment because they weren't doing anything for me here.

Also if you like to do research, on the top of the Forum page Nina (mighty mouse) has pinned a topic called Frequently asked questions -

http://dinet.ipbhost.com/index.php?showforum=1

Look for this too - http://www.potsplace.com/

POTS Place

POTS Overview

Symptoms

Mechanisms

Causes

Detection

What Helps

What to Avoid

Myths

Research

Links

hope this helps a little.

steph

It depends on what combination of symptoms you have too. What are you trying to get under control?

here is one of the past posts

http://dinet.ipbhost.com/index.php?showtop...l=SPORTS+DRINKS