Are clinicians/researchers missing an important symptom?
Every ME/CFS specialist I've seen recognized (and treated) less common types of OI, so I think it's well understood among knowledgeable ME/CFS clinicians.
I suspect the problem in other medical environments is the usual one -- lazy thinking on the part of GPs, some specialists, and medical "businesses" (NHS, HMOs, large clinics) whose focus is on cost containment. They're looking for the clear, easy answer and not willing to spend the mental energy (or money) to learn about or understand the less common forms. If it's not overt POTS with immediate response, they don't care. It doesn't usually help to give them publishied information to show that other forms exist; they won't bother to read it.
I have heard that a few cardiologists understand autonomic dysfunction, but electrophysiologists or autonomic specialists are more likely to recognize and treat delayed OI symptoms.
Should we be raising the issue?
In what context?
ME/CFS specialists and researchers who truly do understand the disease (Klimas, Montoya, etc) are very well aware of the problem.
If you're asking of we should be raising the issue with our own doctors -- absolutely! OI can be a major player in limiting functionality. Whether you can get them to pay any attention is another issue.
One can try insisting on a TTT, a test for vasopressin (ADH), or aldosterone.
One can also keep a record of HR and BP to show the doctor that they are abnormal. Measurements first morning (before you move around), and several times during the day can be helpful in convincing a doctor that something is not right. You can also try
Dr Bell's Simple Test for Orthostatic Intolerance and take that data to a doctor. This can be helpful if you need some kind of tachycardia medication such as a beta-blocker or a calcium-channel blocker. A single measurement at a doctor's office is not going to give them much information and is easily dismissed as "doctor's office stress".
Are different treatments required from treatments for the more usual forms of OI?
One of the more common factors in OI in ME/CFS is low blood volume. This can't necessarily be fixed by increased salt and fluid intake if your hormone system is out of whack. Florinef and desmopressin are sometimes used to correct hormone deficiencies (vasopressin, aldosterone) that are causing low blood volume. Frequently conditions that require desmopressin or Florinef are diagnosed clinically, so it's important to know what symptoms the doctor is looking for and make a point of mentioning those symptoms if you have them. It does not pay to be shy or to understate the situation. Doctors tend not to treat if they think the symptoms are not bothering you much. Squeaky wheel and all that....
Tachycardia meds (beta-blockers and calcium channel blockers) are also used if tachycardia is an issue. I know midodrine is also used in some cases, but I don't know what indications would suggest that med over others.
Thanks, but I know - and I meet those criteria, and said all this to the cardiologist who was booting me out, despite this. You're right about doctors and misconceptions.
You could try finding another cardiologist, or better, an electrophysiologist. Take in some abnormal data and insist that it be put in your medical record if the doctor tries to dismiss you. Tell them you want it there because if you have a serious problem later and end up in the ER, you want it in your file that you have a history of abnormal HR and BP. That might encourage him/her to look into your problem further simply on CYA grounds.
I think we are all finding that we cannot depend on our local physicians to treat us adequately. They're under-informed at best, and mis-informed at worse. To get adequate treatment we have to be the squeaky wheel.
We can't be passive anymore and trust that our local physicians know what they're doing. We need to take them data. We need to insist on treatment. We need not to understate our symptoms. We need to be absolutely clear that our current symptoms are not acceptable and that we
know there are tests and treatments for them. As long as they are working with insufficient knowledge, they are
not the experts.
I'm not suggesting that we don't take the advice of knowledgeable physicians. I discuss all treatment guidance with my ME/CFS specialist and have, so far, always followed her guidance for or against various treatments. But I do that because I know she's knowledgeable and thinking, we discuss treatments, and she explains her thinking to me.
I no longer accept "Because I'm the expert and I say so" from any doctor. I insist on explanation and proof... except when it's clear the doctor is such an idiot that it makes more sense to seek out a different doc.
