Vanderbilt Autonomic Research Study

[Angelika_23]

Hello,

I have been contacted by Vanderbilt to participate in autonomic research study. Huh. I guess even though I didn't meet Mayo's criteria, I met someone else's.

Does anyone else know anything about how it works? What I can expect? Should I even do it?

Thanks,

Angela

[Mrs. Burschman]

As long as it wasn't going to hurt, I'd do it (I'm kind of a weenie when it comes to pain.)

I'd do it just because I would hope that even if it didn't do anything for me, they might learn something to help others. But that's just me. You'd need your own reason.

I don't know anything about the testing. I was speaking on a purely philosophical level.

Happy deciding!

amy

[Angelika_23]

My concern is that my job is already on the line, and as much as I would like to be selfless and help all mankind, I need to know if this would benefit me. Would I finally get a diagnosis? Would I get treatment? Or is this truly just gathering research?

I would have to go off my meds, which will be pure ****, and stay in a hospital far from my family for an extended period of time.

I hate to sound selfish. I'm not normally a selfish person, but I am so frustrated with how things are going. I am so hoping this is the break I need.

Angela

[Mrs. Burschman]

But isn't POTS a diagnosis? Or are doctors unsure that's what you have?

The job thing would be a problem unless you used vacation, I suppose.

Going off meds is ****, I agree with that. My adrenaline gets entirely out of control off Paxil.

I doubt there would be any promises of benefit to you, but it probably depends on the study. Is it for a new treatment, or just more information for them? Even if it was for a new drug, you could end up in the placebo group.

I would imagine that if you need to get answers to make taking part worth it, you probably shouldn't. But that's just my two cents, which are worth, well, two cents. Or less.

Amy

[Ernie]

Hi,

Nothing

[Sophia3]

You MUST go for a definitive diagnosis!! If you have autonomic stuff (which you probably do)

you need VALIDATION which you will get at Vanderbilt.

So go.

FEW docs DISMISS Vanderbilty or Mayo or Cleveland Clinic.

I am sending you a PM.

[Roselover]

I've been to Vanderbilt. But if you search "Vanderbilt" and look for "Vanderbilt Chronicles" by Sunfish you'll get a great description of what it will be like.

They tend to tailor the tests they put you through - but it will also depend on what they are currently studying.

But you will get a Posture study with catecholemines measured and an Autonomic Reflex Test. Then you will probably do several medication trials. You get the results and info of what you tried after you are done with your time there.

I really suggest you read Sunfishe's post and you'll have a really good feel for what it's like.

~Roselover

[Sophia3]

From what I have read, Angela has had NO DOCTOR DEFINE her autonomic dysfunction.

NOBODY is taking her seriously that she is ill.

She is being tossed around from doctor to doctor with NO REAL DIAGNOSIS

NO VALIDATION!!!

Vanderbilt WILL tell you what your autonomic situation is.

THEY WILL VALIDATE Dysautonomia is real.

The ones here telling you it is not worth a go, they have not walked a mile in your shoes.

I have spoken to dozens who have gone there. I know a few who felt the place ....if it did not save their illness, it saved their sanity.

Please check your PMs. I will explain more there.

Plus, its CLOSER than Mayo ..I know of a few who have been to vanderbilt MORE THAN ONCE and like the place. The staff there "gets it". Getting to Mayo from this area would be such a journey compared to Vandy. THAT is to consider as well when leaving family.

[Mrs. Burschman]

I'm sorry if I offended anyone. Like I said, it was just my opinion. That and a buck might get you half a coffee at Starbuck's.

I know nothing about Vanderbilt, except they seem to know a lot about the autonomic nervous system.

Amy

[maryfw]

Ulitmately only you can decide if it is worth it or not. If you can do it without jeopardizing your job I would say GO FOR IT. But I don't walk in your shoes. Best of luck to you and if you do get to do it, please keep us updated.

mary

[Ernie]

Hi,

I went then for 10 days. I was badly mistreated. I already had my diagnosis before I got there. I did not get any treatment and no report. I will never go back there and I ask them to take my name off there list of recall!!!!

I lost my time and money and it took me months to recuperate from all the mistreatment I suffered.

I heard some had a good experience! Lucky for them.

[Sophia3]

Ernie

I remember your saying you had a horrible experience and have yet to hear of duplicate stories though I do not doubt that happened.

I also know there have been new staffing changes and i was told the research is better funded as well. so there is a host of screenings they do and many different studies.

Even though I have dx. many of the studies now are VERY INTERESTING and I would love to be a part of them if it was possible for me to travel....

Still, Angela has had idiot doctors, making HER feel like she just needs to not be anxious or IMPLYING it's MENTAL.

A trip to VANDY for the screening ALONE (even if she did not fit the research Protocol) could probably save her sanity at this point.

AND more important VALIDATE HER ILLNESS IS REAL

A trip to Grubb could do the same thing but he is also a 9 month wait and with Angela apparently, worried about her job, SHE needs to get a dx going NOW. She needs real autonomic docs giving her ANSWERS NOW.

I was going to send her to my doctor but he is no longer seeing new pts.

She deserves somebody to give her a real Tilt table test.

And she could always follow up with dr. Grubb since he would do NO testing but simply go by her previous testing, and whats been ruled out, etc. Do keep the Grubb, appt, too Angela. Just in case you are not improved by then.

[Sophia3]

Here is Sunfish's experience in a long, detailed post, Angela. Hope this helps

http://dinet.ipbhost.com/index.php?showtopic=2769&st=0

[morgan617]

I contacted them, talked to a Dr. personally, got an appointment, sent my records, got ready to go and got a form letter in the mail saying never mind, don't bother coming, we don't have any interest. I have no idea why they lost interest.

My primary called them at least 5 times, left 5 different numbers he could be reached at, and he never heard from them.

I've heard good and bad from various people. Some have had great experiences and some really regret that they went. Ernie's is not the only bad story I've seen here.

I have never received an official diagnosis either and have survived. Is it depressing and discouraging? Of course. But I have a definitive diagnosis on my periodic paralysis and still got another "conversion" diagnosis this week, with unequivical proof in hand. I know I'm really sick and the people close to me know I am, and I am satidfied with that at the moment. (After a bad doctor or ER visit, that may change momentarily, but then I'm okay again.)

Only you can decide if you want this, and how badly you want it. All we can do is tell you what our experiences are. You digest those and then decide. I wouldn't go there now if they paid me, because of the way they treated me and my doctor. Others won't go anywhere else.

If it's a research project, I don't think you are allowed to see the results, so I am not sure that would be much help to you. If it's for diagnostic purposes, that may be different.

No one can tell you you have to go or you can't go. I know this is not an easy decision by any stretch of the imagination. I guess if it were me, I'd take a piece of paper and write the pros on one side and the cons on the other and see which is the most favorable.

There was a time I would have done anything to get every diagnosis I could for validation. I just don't feel that pressing need anymore. You may feel differently. I guess most people do. I just don't, but that's just me.

Whatever you decide, it will not be the right or wrong decision, it will just be your decision. Good luck sweetie....morgan

[Maxine]

Ernie,

I remember a guy who I met that went though the studies at the same research facility. He said it was a nightmare, and once he didn't give the necessary results to fit into their little box, he was dismissed.

He had a horrible reaction to the antibiotic trial study some time ago, and when he tried to go back for help for the terrible set back he encountered from the medication trial, he was treated terribly. He said his OI got much worse, and had he not been very physically fit, he may not have been able to walk at all.

I met another woman who went there with questionable ANS dysfunction, and they were very rude to her also. she called me from the hotel room crying in despair.

Maxine :0)

[yogini]

I think many of us on this board have been around POTS for years and seen many, many doctors and are probably in a different stage of our journeys. Once you've been around for a while, you get a better sense of what might be helpful and when it makes sense to turn down drs appointments. I think in order to get to that stage, you have to see a lot of doctors and you will inevitably not be happy with all of them. That's just the nature of our condition and the options available to us. When you are starting out, I do think it makes sense to go to one of the "leading" dysautonomia specialists if you can. From reading posts here for over 3 years and reading POTS literature in general, it seems like Vanderbilt is a good place as any to start. Because I think you could post about almost all of the autonomic doctors and institutions get very mixed reviews. Read through old posts and you will see!

[deucykub]

Are they only inviting you there for research, or are they also willing to take you on as a patient?

I would think that if they are interested in your well-being as well as their own research aims, they would schedule a clinical appointment for you if you so desired before you participate in research. My suggestion is to give them a call and tell them you would like a clinical appointment first, and after that, decide if Vanderbilt is the right place for you. Your first goal, in my very biased opinion, should be to get a solid diagnosis and a reliable treating physician who is willing to work with you.

I participated in research with my treating physician at Beth Israel Deaconess Medical Center in Boston. The research itself was fascinating, and I was treated like gold. It was an enjoyable and educational experience for me.

However, and this a BIG however, going off the meds was a very bad decision for me. I crashed while I was going off of them and then had a very weird crash about two weeks after I went back on them that lasted for a month. I couldn't work during any of that time. I asked all my doctors about whether they thought I would have a difficult time regaining what little I had gained in my health if I went off the meds. Each of them thought I would be fine. During my month-long crash though, my cardiologist said, "Well, we definitely misjudged your reaction to stopping the medications."

I guess my point here is you just can't know how you'll respond to that. My POTS specialist doctors didn't even call that one right (and I'm sure they did their very best; they would never endanger my health). If you're really worried about work right now, and boy do I understand that, weighing the possibility of being worse after the research might be worth some consideration.

Oh, and it is never selfish to ensure you are taking care of yourself and your family. If you can't do research now, there is somebody out there who can, and these opportunities will roll around again.

[JoyNtheJourney]

Hi~

I am new to the boards but I was instantly drawn to this topic. I was diagnosed with Dysautonomia - POTS/OI a couple of months ago. I have been experiencing a lot of the symptoms for a long, long time but they all multiplied exponentially after having Pericarditis in July. I was finally diagnosed via TTT in September. Because we have been unable to successfully treat any of the symptoms, my cardiologist completed all the paperwork to have me considered for the research study. Yesterday, Bonnie Black, called and said I was accepted into their preliminary screening process (2 days there for evaluation and then consideration to continue 12 more days with the research process). She sent me the consent forms to sign and I faxed them back.

Now I'm worried about coming off my meds long enough to go. So far, as I said before, I haven't had any POTS type meds that have really helped. I am allergic to Midodrine and Beta Blockers cause my B/P to drop too low and I pass out. I'm currently on Florinef but have not had any positive results with it. The meds I am very concerned about d/c'ing are Klonopin and Percocet. I have been taking one Benzo or the other for several years for insomnia/anxiety and am now physically dependent on it. (I've tried weaning and it is a horrible, horrible experience!) I've also been on various narcotics for a long time due to chronic pain from injuries sustained in an automobile accident and most recently abdominal surgery, oral surgery, endometriosis and chest pain (from POTS).

I'm just wondering if anyone who has been to Vandy or any other reseach facility has had to deal with w/d from any of their non-Dysautonomia meds?? I really want to go as I hope they will at least come up with some type of treatment plan. But what do I do about the meds??

Any advice would be greatly appreciated!!

Blessings,

[Mrs. Burschman]

Welcome, Joy! I love your nicely decorated screen name!

I don't have any info for you. Just wanted to tell you we're happy to have you here (though not happy you have the need!)

Amy

[JoyNtheJourney]

Welcome, Joy! I love your nicely decorated screen name!

I don't have any info for you. Just wanted to tell you we're happy to have you here (though not happy you have the need!)

Amy

Thanks so much! Glad to have found you all! It's been a real blessing to me.

[Sophia3]

Angela

I just remembered a post from another site, where a girl said she went to Vandy and had testing ALL in one day...she had a TTT, the hand in ice water test, handgrip test and I think Valsalva maneuver...a bunch of stuff in ONE DAY. They then pinpointed the TYPE of POTS she had and sent her home.

THAT may be worth considering as opposed to RESEARCH, you know? While you still have insurance see if they will pay for THAT. THAT way you get the info YOU NEED to autonomic stuff. If you have OTHER stuff going on, Vanderbilt will often point that out and say that it is out of their jurisdiction, but you need to see a doc about it (for instance, gastro stuff, or wacky Neurological stuff that does not seem JUST ANS related.

If somebody from NDRF remember THIS post and the name of that person that WROTE of that one day testing at Vanderbilt, perhaps they can PM you with the information.

since I found out you have more NEURO stuff going on that I previously was enlightened about, I think I would rule out the LONG TERM research. but the one day testing would only keep you gone from home two nights at the most.

Just an idea. I shall rest my brain and try to find who had that one day testing at Vandy. If I had known THAT kind of autonomic testing could've been done years ago, I would have gone for that. Because the one day testing is not about research but about TAILORING the needs of INDIVIDUAL pts. which is where you are.

Well, along with your OTHER goings on. :)

Hang in there and keep reading and hopefully we can find you a local doc.

[Ernie]

Hi Joy,

I think this is a question you should ask Bonnie Black as she is the one responsible for those decisions.