lancewhit

Just a note for those of you who need to be on small doses of Lexapro or other medications. You can get a liquid form of Lexapro and probably other medications. This gives you much greater control over measuring out a small dose than trying to cut the pill form in half or quarters. I have dysautonomia, and my doctor just prescribed Lexapro to see if it will help. But I'm extremely sensitive to medication, so we're starting with a very low dose, and then may increase it if necessary. And for that reason he prescribed the liquid form, which is very convenient to use at small or large doses.

I read about the clinical study that Dr. Stewart is conducting on POTS. But it's restricted to people ages 15-29. Dr. Stewart does sound like one of the experts in this field. I wish I could find someone like him in the NY area who treats adults.

I was on Clonidine for several months, and it helped, at least temporarily. But my major dysautonomic symptom is heat sensitivity. I'm usually okay (blood pressure wise and otherwise) in cool environments. But if I'm in a very warm place, esp. a warm, crowded, congested place, then I start getting warm and flush and pale, experience hot flashes, and that's when my BP can drop. An endocrinologist put me on Clonodine to try to alleviate my heat sensitivity, and for that specific reason it seemed to help me. I was on the .1mg patch, and didn't have any side effects.

Hi all, I live near NYC, have been diagnosed with some type of dysautonomia, and have also been searching for a good doctor. I'm familar with some of the doctors mentioned here. I contacted Dr. Weimer, but was told he is not seeing new patients. I tried contacting Dr. Stewart in Valhalla a couple of times, but never got a reply. I assume he mostly focuses on pediatric patients (I'm in my 40s). And I tried another doctor who was mentioned in one of the messages above, but like other patients, had a very awful experience with him. I'd appreciate any recommendations on other doctors--neurologists, cardiologists, etc., in the NYC area. Thank you.

I totally agree with these suggestions. I've tried them myself. And in fact, it's one way of weeding out the good doctors from the bad ones. I've been researching a lot on dysautonomia and my symptoms, which probably many of us do. And often I compile a short list of questions, both when I see a new doctor and when I see an existing one. The bad doctors usually get annoyed and dismissive over having to spend time answering questions. The good doctors are happy to answer my questions; they don't rush me; they take their time addressing them, and often praise me for asking such good questions. Another thing I find is that good doctors welcome information their patients find that may be of value. My primary doctor is always happy when I find new info on the Internet or elsewhere that sheds more light on my condition and symptoms. She treats another patient with symptoms similar to mine. And in fact, when I told her about this Web site, she was so happy and asked if she could share the link to this site with this other patient. Ideally, the Patient/Doctor relationship should be a true partnership, with both people trusting each other and working together to solve a problem. Whenever you can find a doctor who can work that way, it's always a promising sign.

I think that running into arrogant, dismissive, angry doctors is an unfortunate fact of life for many of us with our types of symptoms. It was shocking to me at first. I remember one of the first neurologists I saw. When I tried to explain my symptoms to him, he got angry with me because I didn't have a clearly-defined illness--just a "vague set of symptoms" according to him. I told him I thought that he as a doctor could analyze my symptoms and offer some diagnosis. That seemed to make him even angrier. Since then I've seen a few other doctors with similar personality quirks--arrogant, impatient, annoyed, angry, dismissive, disinterested. And of course I've been to one doctor who felt my symptoms were psychosomatic and that I should see a psychiatrist. And he was so unpleasant and openly hostile to me. I felt like telling him that he was the one who should see a psychiatrist. His behavior was so unprofessional--I seriously considered filing a complaint against him with his hospital but didn't want to get distracted by things like that when I'm trying to work on getting better. I think a lot of these doctors are frustrated for several reasons--1) They don't know how to deal with patients with difficult symptoms; they don't have the time or the resources. 2) They're frustrated with the whole HMO/Managed Care system. The HMO system doesn't work too well for patients with difficult symptoms, like dysautonomia. And I think it's just not profitable for some of these HMO doctors to see patients who are not easy to diagnose or treat. 3) Some doctors seem to see the patient as an adversary rather than as a partner to work with to treat your symptoms. That's a strange behavior that I've seen a couple of times. On the positive side, I can testify that there are many execeptional doctors out there. It sometimes takes a lot of effort to find them. But they're out there. I've met some wonderful doctors--caring, sympathetic, knowledgeable, professional. Doctors who take me seriously, treat me with respect, and are willing to work with me to try to diagnose and treat my symptoms. So for every bad doctor out there, there's at least a few good ones. You just have to keep searching until you find them.

Thanks for your responses. This may be a tough one. I did see three so-called experts--all neurologists. The neurologist who did the test seemed a bit uncertain, though he thought I may have POTS. His only advice was to drink fluids and add sallt to my diet. That didn't help much; all it did was increase my resting BP, which concerned my primary doctor who didn't want me to become hypertensive. The second doctor was more sure of himself and declared that I have NMH. He put me on a beta blocker (Inderal) which gave me extreme sleep disorders as a side effect (while on the drug, I could hardly sleep at all; once I stopped it, my sleep eventually got better). After I told him about my reaction to the drug, he got mad at me and said he couldn't treat me any further if I was so sensitive to medication. (I've read that hypersensitivity to medication is one symptom of people with dysautonomic conditions, so I'm not sure why this doctor was so shocked and upset at me by my reaction.) The third doctor seemed to dismiss the results of the test, I assume because I was symptomatic only with the use of the nitroglycerine, and concluded that I must be psychosomatic. (I'm not sure why some doctors jump to the conclusion that their patients are psychosomatic based on little more than their own rash judgements). I'm still searching for yet another doctor who can help. This has been one of the toughest things about having these symptoms--trying to get more than one doctor to agree on a diagnosis and treatment, trying to be taken seriously by doctors, being treated in an arrogant or angry or dismissive way by doctors. Sometimes the doctors are worse than the symptoms. I'm now working with a local neurologist who fortunately has the patience and kindness and professionalism that some of the other doctors seem to lack. He's taking my symptoms seriously and believes I have some dysautonomic condition. But this doctor is not an expert in dysautonomia. So I feel I have to keep searching for someone who can correctly diagnose me and find the right treatment that will help me without creating major side effects. I guess that's the challenge we all face.

Can anyone comment on the validity of tilt table testing when giving the patient something like nitroglycerine? After passing out a year ago, I've suffered from symptoms of lightheadedness, heat sensitivity, flushing, sleep disorders, abnormal sweating, hypersensitivity, heart palpitations, and several other symptoms intermittently. I had a tilt table test recently. During the initial tilting phase, I was not symptomatic. During the second phase, the doctor gave me a small dosage of nitroglycerine, which I've read is standard procedure with this test among lots of doctors to increase your adrenaline. At that point, I became very symptomatic--sweating, extreme lightheadedness, dizziness, nausea, shaking. BP and heart rate both went down. It took me a couple of hours after the test before I felt better. The doctor who did the test felt I may have POTS, another doctor who reviewed the test results felt I may have NMH, and a third doctor seemed to be dismissive of the results, although he agreed that I do have some type of tendency toward syncope. My question: what might it indicate when you're symptomatic during a tilt table only after getting something that increases your adrenaline? I seem to be symptomatic typically in warm environments. Heat sensitivity is the key symptom and trigger for me. Just standing in place for a long time doesn't necessarily trigger my symptoms, but if I'm in a warm environment, then that's when I experience strong symptoms. Has anyone else had a similar reaction to a tilt table test, or similar symptoms? I'm curious to hear from other people about this. Thanks for your feedback.

I also have sleep problems. I've been tentatively diagnosed with POTS or certainly a related disorder. And I've had chronic insomnia over the past six months (never had it before). I typically get about 3-5 hours of sleep per night. I usually have no trouble falling asleep, but then I wake up around 2 or 3 am and rarely am able to fall back to sleep. I've tried all sorts of medication (Ambien, Sonata, etc.) and supplements (5-HTP, Melatonin, Valerian, etc.). But nothing has done the trick. One idea: I have appointments with a couple of sleep disorder clinics in the next two weeks. Many sleep disorder clinics or studies seem to approach insomnia from a pulmonary viewpoint (they look only for physical problems like sleep apnea, restless leg syndrome, etc.) I went for a study like this, and they didn't find any physical reasons for my insomnia. In my case my insomnia probably has more of a neurological cause. The two clinics I'm going to have neurologists on staff, so I'm hoping that they may be able to provide a better diagnosis. I would check out any sleep medicine doctors or sleep clinics in your area, and see if they have any neurologists on staff that you can consult with. Good luck to all of us!