dysautonomia research

[Guest tearose]

What institutions are currently doing research specifically on dysautonomia? Most times it seems like autonomic disfunction is a "side" in a disease process being studied. I wonder how they get funding to study this rare disorder. I'm just supposing the three "top" places are Mayo Clinic, Cleveland Clinic and Vandy in Tenn. Any ideas? I was just thinking about reading up on some of the latest research and wondered if anyone knew. Thanks, tearose

[Gena]

A quick search on the internet led me of course to the NDRF http://www.ndrf.org/

and also this link for the National Institute of Neurological Disorders and Stroke (NINDS). ... The NINDS supports and conducts research on dysautonomia

http://accessible.ninds.nih.gov/disorders/...uto/dysauto.htm. Once you click on this link, click on research literature for more studies. Also this link is good for hereditary types of dysautonomia. http://accessible.ninds.nih.gov/news_and_e...onomia_2002.htm

if you scroll down toward the section where they talk about the third type of dysautonomia as it relates to the genetics of catecholamine metabolism and POTS.

They also have an outline of a presentation that was given in 2002.

I found this one to be really odd...it's an article about dysautonomia in animals.

http://www.cvm.missouri.edu/neurology/Dysauton/DYSAUCVT.htm

And one final link that listed some more human studies...

http://www.medhelp.org/HealthTopics/Dysautonomia.html

You're a great researcher Tearose. So let us know if you find anything interesting in these links. Thanks for keeping us informed!

[MomtoGiuliana]

I know Johns Hopkins has a section on CFS and dysautonomia. My current doctor was involved in research and treatment there until a few years ago.

http://www.hopkinschildrens.org/specialtie...m?specialtyID=4

I also found this interesting article, partially authored by a Johns Hopkins researcher, while trying to find this link for you: Endogenous Circulating Sympatholytic Factor in Orthostatic Intolerance

http://hyper.ahajournals.org/cgi/content/full/36/4/553

Katherine

[Guest tearose]

Thanks Gena! I'm really in a seriously curious mode right now and I have this searing desire to find out "whos who" in dysautonomia today. Not last year or even a couple years ago. I will do my best research and report back. I hope to have my trusty research fellow "briar" along for the ride!

Just out of immediate curiosity I decided to click on the link to the animals with dysautonomia and began to wonder if the pooch had to endure the doctor saying...

"Are you sure you aren't stressed honey? Are you anxious or not eating right? Is everything okay at home?"

In a weird sort of way it is validating to know animals have this disorder too!!!

back to decorating....tearose

PS Thanks Katherine, I'll get on those leads too! t

[MomtoGiuliana]

I just looked at that article on dysautonomia in dogs in the midwest. http://www.cvm.missouri.edu/neurology/Dysauton/DYSAUCVT.htm

That is WEIRD and it makes you wonder if the cause could be environmental--or viral.

Note the last comment: "...but the increasing number of cases seen in the midwest raises the concern that an epidemic such as occurred in cats in England could be on the horizon."

This form is clearly not like what most of us experience in that it is highly progressive and usually eventually fatal.

Katherine

[DancingLight]

tearose...you're making me laugh again! i talk to my dog like he understands me.... the sad thing is...in general...our vet gives us the most thorough, understanding care i have ever experienced. i wish the medical world would catch on. although, i can't complain one little itty bit rigth now b/c i am very blessed in that dep't...but wasn't always. our dogs are always taken seriously luckily no one's asked them if they are sure they aren't just anxious! you cracked me up on that though!

emily

[briarrose]

Hey guys I only have a minute and will check it out later but off the top of my head, NIH, Mayo and Vanderbilt are the biggies. I believe someone in NY, again don't have time to verify the extras; just know of the main players off the top of my head.

Steph

[briarrose]

A good article about Neuropathic pain.

Tuesday, November 25, 2003

Treatment Options Expand for Patients with Neuropathic Pain

"When I speak to an audience, I tell them that the lecture I?m going to give about treatment is an entirely different lecture than the one I would have given five years ago. The developments have been that rapid."

Treatment options for people who suffer from severe pain caused by damage to nerves have expanded dramatically in just the past five years, say scientists and physicians who have published the first-ever guidelines for treating such pain. The guidelines for treating neuropathic pain appear in the November issue of the Archives of Neurology.

Though we may not appreciate it, much of the pain we feel every day is normal and healthy. The intense pain we feel after putting a hand on a hot stove, for instance, tells you that you?re doing damage to your body and to move your hand immediately. But neuropathic pain serves no useful purpose ? it?s the result of damage to nerves that transmit pain signals. And so the nerves send errant, unnecessary pain signals that can put a person in constant, pointless, agonizing pain.

?This type of pain is very abnormal,? says Robert Dworkin, Ph.D., the lead author of the guidelines and director of the Anesthesiology Clinical Research Center at the University of Rochester Medical Center. ?Many patients worry about how to describe their pain, because it can be so unusual. It seems to come out of nowhere, and it can be excruciating.?

Shingles is one of the most common causes of neuropathic pain. For most shingles patients, the painful rash heals in two to three weeks, and the pain is gone permanently. But one in four patients suffers from tremendous pain months or even years after the skin rash heals, because of damage to the nerves, a condition known as post-herpetic neuralgia.

?For many patients who had shingles, just the touch of a shirt or a blouse lightly brushing against the skin can be excruciatingly painful, for years. And so what happens? They stay home, topless. It?s hard to go to work, hold a job, or see family and friends if you?re sitting home unable to wear a shirt or a blouse. It can truly be disabling,? says Dworkin.

Such patients are among the 4 to 6 million people in the United States that Dworkin estimates have neuropathic pain. The group also includes many people with diabetes who can develop a painful condition known as diabetic neuropathy. Such patients might feel extreme pain from just the slightest touch of bed sheets against their feet. Neuropathic pain also affects some patients who have or had cancer, multiple sclerosis, a stroke, a spinal cord injury, or a number of other conditions.

It was just a little more than five years ago that Dworkin pulled together experts from around the world to create the first annual International Conference on the Mechanisms and Treatment of Neuropathic Pain. Then, in late 1998, the Journal of the American Medical Association published two papers on the use of the anti-seizure drug gabapentin to treat pain in patients with diabetes and after shingles. The papers, Dworkin says, stoked the interest of the pharmaceutical industry in neuropathic pain, a condition which had been seen little improvement in treatment for almost two decades.

?When I speak to an audience, I tell them that the lecture I?m going to give about treatment is an entirely different lecture than the one I would have given five years ago,? says Dworkin. ?The developments have been that rapid.?

For most of the past 20 years, doctors treating neuropathic pain have turned to a class of medications known as tricyclic antidepressants, such as amitriptyline. But with recent advances in pain treatment, Dworkin and 20 co-authors recommend five types of medication. In addition to the tricyclic antidepressants, the team recommends gabapentin, originally developed as an anti-seizure medication; a lidocaine patch; narcotics such as oxycontin; and the painkiller tramadol.

?Both patients and doctors need to know that now there are several effective choices when it comes to controlling neuropathic pain,? Dworkin says. ?These developments are significant; it makes relief possible for some patients who have never before been able to have their pain reduced. Still, there is a whole lot of room for improvement, and research on improved treatments for neuropathic pain is continuing.?

The compilation of the guidelines was funded by Endo Pharmaceuticals, a company that makes and sells a lidocaine patch to treat neuralgia following shingles.

For more media inquiries, contact:

Tom Rickey

(585) 275-7954

tom_rickey@urmc.rochester.edu

For patient information, contact:

585-275-3524

[Guest GayleP]

NIH, Vandy and Mayo. At Mayo I had to sign a consent to be part of a study although I wasn't doing anything like in most research studies except seeing Dr Low.

[Guest GayleP]

Emily,

I had to laugh at what you said about your dog getting better medical care than you.

I have always found the same thing with my dogs. My Shnauzer who died last May used to see the best dog neurologist. The nicest guy with a wonderful bedside manner and very thourough. I was kind of jealous. In fact all his vets were amazing and same with our new dog's vets.

I wish my own neurologists and doctors were as good.

GayleP

[briarrose]

Here is a study at Mt. Sinai; Dysautonomia

Droxidopa in Treating Patients With Neurogenic Hypotension

This study is currently recruiting patients.

Sponsored by: Mount Sinai Medical Center

Information provided by: Office of Rare Diseases (ORD)

Purpose

RATIONALE: Neurogenic hypotension is a fall in blood pressure that occurs when one moves from a lying down to a standing position or after eating a meal. It causes one to feel dizzy, light headed, and weak. Neurogenic hypotension is caused by a problem in the part of the nervous system that controls such functions as heart rate and blood pressure. Droxidopa, a drug that may increase blood pressure, may be an effective treatment for neurogenic hypotension. PURPOSE: Clinical trial to study the effectiveness of droxidopa in treating patients who have neurogenic hypotension.

Condition Treatment or Intervention

Shy-Drager Syndrome

Orthostatic Hypotension

Drug: droxidopa

MedlinePlus related topics: Degenerative Nerve Diseases; Low Blood Pressure

Study Type: Interventional

Study Design: Treatment

Official Title: Study of Droxidopa in Patients with Neurologic Hypotension

Further Study Details:

Study start: March 1999

PROTOCOL OUTLINE: Patients receive escalating doses of droxidopa or placebo for 7-14 days. Patients undergo blood pressure measurements hourly in both supine and standing positions.

Eligibility

Ages Eligible for Study: 20 Years and above, Genders Eligible for Study: Both

Criteria

PROTOCOL ENTRY CRITERIA:

--Disease Characteristics--

Orthostatic hypotension due to autonomic nervous system failure Fall in systolic blood pressure (supine to standing) of at least 20 mm Hg and diastolic blood pressure of at least 15 mm Hg AND Symptoms of hypotension such as dizziness, light-headedness, unsteadiness, dimming or blurred vision

History of syncope or near-syncope

--Prior/Concurrent Therapy--

Endocrine therapy: No concurrent adrenergics Concurrent fludrocortisone allowed

Other: Concurrent indomethacin, support garments, and high salt diets allowed

Location and Contact Information

New York

Mount Sinai School of Medicine, New York, New York, 10029, United States; Recruiting

Horacio Kaufmann 212-241-7315

Study chairs or principal investigators

Horacio Kaufmann, Study Chair, Mount Sinai Medical Center

More Information

Study ID Numbers: 199/14180; MTS-GCO-98-243-3-NE

Record last reviewed: October 2003

Record first received: October 18, 1999

ClinicalTrials.gov Identifier: NCT00004478

Health Authority: Unspecified

ClinicalTrials.gov processed this record on 2004-12-06

[briarrose]

It would be extremely beneficial to see the Pots Place Research Page

http://www.potsplace.com/research.htm