Who's the best doctor for Dysautonomia, OI, etc.? Need protocols for tilt, etc.

[eric_s]

Hi

Could somebody tell me which doctor, anywhere in the world, has experience with dysautonomia, OI, and so on? Especially in connection with ME/CFS. I would like to get these tests done, tilt table test and others, if they make sense, but i don't know if doctors around here have much of an idea. Maybe i could get a specialist who has experience with these problems in ME/CFS to cooperate with a local specialist. This would be useful not only for myself, but for many other people who could then be referred to that doctor. The goal would be to diagnose and document these things and, if possible, treat them.

Thanks

 

[Sushi]

Hi

Could somebody tell me which doctor, anywhere in the world, has experience with dysautonomia, OI, and so on? Especially in connection with ME/CFS. I would like to get these tests done, tilt table test and others, if they make sense, but i don't know if doctors around here have much of an idea. Maybe i could get a specialist who has experience with these problems in ME/CFS to cooperate with a local specialist. This would be useful not only for myself, but for many other people who could then be referred to that doctor. The goal would be to diagnose and document these things and, if possible, treat them.

Thanks

I saw a dysautonomia specialist for a few years and got all those tests. The problem I found was that most doctors who specialize in dysautonomia (and there are not many) don't look at it as part of the whole ME/CFS syndrome and focus on using drugs to deal with symptoms. You might do better with an ME/CFS specialist who also works with treating dysautonomia, as ultmately most of the autonomic dysfunction is symptomatic of deeper causes.

I think Nancy Klimas does this, among others.

Best wishes,
Sushi

 

[searcher]

Nancy Klimas does seem like the best for combining an understanding of ME/CFS and dysautonomia. For dysautonomia specifically, I really like the Vanderbilt ANS clinic (Dr Robertson, Dr Raj, and Dr Biaggioni.) They are very familiar with ME/CFS, but I agree with Sushi that they tend to see ME/CFS as an extension of ANS problems, whereas for most of us dysautonomia is just one of our symptoms. However they're great for testing, are very understanding, and are responsive if you have questions after you leave.

 

[ixchelkali]

Dr Peter Rowe of Johns Hopkins is one of the leading experts. He was one of the authors of the original paper linking OI with CFS in 1995, and has studied and written about it extensively since. He's a pediatrician at Johns Hopkins Children's Center. He might be able to give you the name of another expert. http://www.hopkinschildrens.org/Peter-Rowe-MD.aspx

 

[Marg]

I am a patient of Dr. Klimas. She identified my OI before the tilt table test with my week's BP log. The tilt table confirmed it. No one esle ever had and I have made the rounds. No one ever suggested it only said my BP was borderline high.

The protocol is to increase blood volume. I have the high BP kind. So, .02 beta blocker patch, an electrolyte drink with potassium and salt balanced and drink a lot of water.

You can go to www.oiresource.com, there is a lot there. There are directions for a poor man's tilt table test...you can check it yourself. There is a lot of information there...just keep digging.

 

[glenp]

Dr Rowe

From what I have read I like Dr. Rowe. He has a good webinaire that you can watch. I use him as a reference point with my GP. As per Dr. Rowe's information I use dextroamphetamine which helps me quite a bit. I also wear travel socks.

Cort had Dr Rowe's webinaire posted - you can view it here

http://www.youtube.com/watch?v=5iF30TVLaRE


glen

 

[heapsreal]

Im only partially through the utube. I wonder if its alot more of a problem for most of us me/cfs people then we think. I have never really looked into that much as my blood pressure is generally good and is usually high when the dr takes it(white coat hypertension). But i do find sitting for long periods of time or standing, fatiguing and have the urge to lie down alot and within 10-15 min of lying down i feel better. I also get sweat attacks which i use to put down to some immune regulation and lately thought is was more to do with low adrenal hormones and my system trying to compensate for this by increasing noradrenaline etc. Also i think my brain fog is different to what it was like the first few years of cfs too.

What i cant get my head around for OI and POTS treatments is for some they use stimulants and some benfit from sedatives and antihypertensives etc that would normally lower blood pressure, although i understand they are used to lower the adrenergic response to low bp, my thinking is lowering HR is going to lower bp more. Maybe someone can enlighten me, i cant seem to get my head around this part. Also a recent article from dr bell mentioned how pots/oi people improved on narcotics, generally these things lower bp and hr, but i do find my brain fog improves with tramadol, which i thought was maybe through its effects on noradrenaline, but maybe it is the effects on opiate receptors thats helping. There just seems to be alot of yin and yang treatments going on or to me seem to contradict giving certain treatments to people with low bp. My thinking was the tachycardia was a compensatory effect of low bp but i dont know now??? I need to read abit more to get my head around it and watch the rest of the utube video.

cheers!!!

 

[eric_s]

Thanks a lot for all the information. If anyone knows more, just add it...

Eric

 

[Emootje]

Dysautonomia Information Network has a list:
http://www.dinet.org/physicians.htm

 

[sensing progress]

I will second Dr. Klimas and Dr. Rowe. That said, Dr. Rowe is primarily a pediatric physician and I don't know if it's possible to be seen by him if you're an adult.

 

[ahimsa]

Eric, I hope you find a doctor who is helpful. My cardiologist has often suggested Dr. Blair Grubb who is in Ohio. But I'm not sure whether Dr. Grubb knows anything about ME/CFS patients and so he may not understand those additional issues, especially PEM/PENE. It's a lot of travel for me, and I've never been convinced that Dr. Grubb could do much more for me beyond the prescription drugs that I'm already taking, so I've never visited him.

If you're up to it, then it would be great to get an update after you get an appointment with one of these doctors. Thanks!

Now, I hope you don't mind if I respond to heapsreal on this same thread...

Im only partially through the utube.

heapsreal, in case it helps, here's the PDF file with slides that go with the video - http://www.cfids.org/webinar/slides-090110.pdf

I often have trouble watching pre-recorded videos (too long, can be very tiring) so I usually prefer looking at written material. Of course, these slides probably make a lot more sense when Dr. Rowe is explaining them.

It's cool to see the different slides showing what happens to blood pressure (BP) and heart rate (HR) for different types of Orthostatic Intolerance (OI). The POTS example is on page 11 and the NMH example is page 25. My diagnosis is NMH and, sure enough, my title table results are closer to what's shown on page 25. One difference is that my huge drop in blood pressure happens after 20 to 30 minutes, not at minute 6.

... my blood pressure is generally good and is usually high when the dr takes it(white coat hypertension).

Dr. Rowe often reminds patients that routine Blood Pressure (BP) measurements are not enough to diagnose Orthostatic Intolerance (OI). The patient's sitting blood pressure can be normal, or even high, and they may still have some form of OI. Even doing comparisons of sitting vs. standing BP may not catch the problem if you have a type of OI, like NMH, where the huge drop in BP comes after a relatively long delay.

From the Johns Hopkins printed material (see http://www.cfids.org/webinar/cfsinfo2010.pdf for full document):

How are NMH and POTS diagnosed?
NMH and POTS cannot be detected with routine, resting blood pressure or heart rate
screening. The diagnoses can be made with a prolonged standing test or a tilt table test. Although
a 10-minute test is all that is needed to diagnose POTS, this is too brief for diagnosing NMH,
which usually requires at least a 45-minute period of upright posture. Many hospitals and
academic centers throughout the world perform tilt table testing. It allows careful measurement
of the heart rate and blood pressure responses to the head-up position, usually at a 70-degree
angle, in an almost standing position.

Regarding your questions about how different treatments work for different types of OI--NMH and the two(?) different types of POTS--I can't help much on the mechanisms behind them. But I have seen lots of online descriptions that might help. I can't wrap my own head around the medical details but you might want to browse around these medical research web sites:

* Vanderbilt University in Nashville, TN (http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4788)
* Center for Hypotension in NY (http://www.syncope.org/) where Dr. Stewart does research (http://www.cwpw.org/stewart.html)

I hope you get some answers!

 

[heapsreal]

Thanks for all the links guys, starting to get my head around it all now. i think i may have an issue with OI and certain things that can help raise bp do help me, so will talk it over with my doc.

cheers!!!

 

[sandgroper]

There are different types of dysautonomia. Most research focuses on 2 types - Partial Dysautonomia and hyperadrenergic POTS. There are different treatments for each. Actually there are a range of responses to being upright - BP dropping & HR dropping, BP dropping and HR increasing, HR increasing and BP increasing. Then there is the narrowing of the pulse pressure. For me -narrow pulse pressure will cause me to feel off. Also HR with BP increase and also lowish BP.

You can get proper autonomic testing in Brisbane through a neurologist. It seems that the cardiologists only know about bp dropping and compensatory HR increase, so that POTS is not really well understood by many of them. You only need HR increase of 30bpm to qualify for this.

In my case I get the HR going up and at a certain point I can feel a change in my body and I will get tremors or collapse. My noise and light sensitivity become extreme andif i am forced to talk I can become very irritable. It does appear that I have a sympathetic response as witnessed recently by optician - pupils dilated,

Of course the complications of ME make this more difficult to treat. There appears to be a prevalence of autonomic dysfuncton in those with EDS. Moslty PD or it can be mixed type. In my case I'm probably not true hyperadrenergic but an over reponsiveness to adrenaline (common in hypermobile types). There does appear to be a need to define the type but the next best thing is to work through the things that are known to help. It can be that what helps one type will make the other type worse. And yes Beta blockers can drop bp.

The following is from the Indian Pacing Journal which has a good article
"Postural tachycardia syndrome (POTS), characterized by orthostatic tachycardia in the absence of orthostatic hypotension, has been the focus of increasing clinical interest over the last 15 years 1. Patients with POTS complain of symptoms of tachycardia, exercise intolerance, lightheadedness, extreme fatigue, headache and mental clouding. Patients with POTS demonstrate a heart rate increase of ?30 bpm with prolonged standing (5-30 minutes), often have high levels of upright plasma norepinephrine (reflecting sympathetic nervous system activation), and many patients have a low blood volume. POTS can be associated with a high degree of functional disability. Therapies aimed at correcting the hypovolemia and the autonomic imbalance may help relieve the severity of the symptoms"

Cheers sand