doctorguest

There has been a few studies from Vanderbilt, I believe, suggesting that in POTS, there may be sympathetic denervation (i.e. damage to the nerves of the sympathetic nervous system) of the arteries that supply the kidneys. This in turn may cause poor water/salt absorption, resulting in increased urination and perhaps further loss of blood volume. This to me seems a better explanation than any other hypothetical speculations out there. Of course, there is probably more to the mechanism that has yet to be discovered, but the clinical observation remains: many patients with autonomic dysfunction complain of frequent urination which cannot be explained or justified by the increased water/salt intake.

Facial pressure, discomfort or pain are manifestations of migraines. Most people who think they have allergies or sinusitis and who complain of facial pressure have in fact migraine headache, not sinus problems. Lightheadedness, blurry vision, pain behind the eyes, etc. are also manifestations of migraine headache. Many patients with POTS suffer from migraine, which itself is an autonomic disorder.

As others have said, POTS is unlikely to cause this. This is not a facial paralysis, but rather facial muscle fatigue and stiffness. TMJ is a very strong possibility. Potassium problems are unlikely to result solely in facial muscles fatigue; you would be experiencing problems in other muscle groups as well.

Interesting observation about coenzyme Q. There has been a surge of research on it in relationship with heart disease, Parkinson's disease, and other disorders. So far, the results have been mixed, but I believe it may still have some utility in clinical practice on an individual basis. I am glad you found positive effect at that low dose. The downside of coQ10 is that it can be quite expensive at high doses.

Hi Michele, Glad the appointment went well and that the doctor was competent! Good luck with your treatment plan.

There is definitely a connection between POTS and hormonal changes. This is why many women feel worse around menarche, menstruation or menopause. If you feel good right now, there is no use in worrying about what had happened or what could happen in the future. Just enjoy your energy and keep doing what's important to you. As to your diagnosis, you may very well have POTS, which for you seems to be recurrent in nature. If it's not POTS, it may be another form of autonomic dysfunction or orthostatic intolerance since there are many types of disorders that are variations on one theme - fatigue, dizziness, tachycardia, etc. Good luck, and enjoy your health and your baby!

I don't think there is any data published on the topic. In the past, resistance training where you increase the muscle bulk of the lower extremities, which in turn improves the venous return when you stand, was recommended for patients with OI and NCS. I think there are studies going on right now in TX looking at exercise training in patients with POTS, so it would be nice to review the results when these become available. I also know of another study on the effect of exercise in patients with Chronic Fatigue Syndrome, and in that study, the researchers did not differentiate between POTS, NCS, etc. so the patient population may not accurately represent patients with POTS or even a general autonomic dysfunction (since CFS is even more complicated diagnosis than POTS ). In that study, I believe they showed that on the first day of exercise, the anaerobic threshold was still somewhere within the normal limits in patients with CFS, but on the second day of exercise, the anaerobic threshold was significantly below the normal range. They concluded that this finding may correlate with the post-exertional fatigue experienced by CFS patients after a physical activity. Keep in mind that research in this area is still in its embryonic stages, but at least there are some groups out there that are interested in this topic. I think a good option might be to get in touch with your cardiologist so that she/he could refer you for cardiac rehab where they can monitor your HR, BP, etc., and provide a safe environment for exercise, as somebody had mentioned.

Hi Mark, I have heard that many patients feel better when lying flat compared to sitting or standing. Do you feel bad while still supine or do you begin to feel worse when you get up AFTER being supine for a while? For patients with OI, doctors recommend sleeping on blocks to elevate the head of the bed so that in the morning, there is less OI upon getting up. Some people feel better with that, while others can't really sleep well in this position. I am assuming that you had an echo done for this complaint. Not sleeping at night is awful and greatly intensifies all kinds of symptoms during the daytime. Hope you can find some relief for insomnia! Take care, drg

Right. Alcohol is a major trigger of palpitations, whether accompanied by true cardiac arrhythmia or not. It is probably best if you stay away from alcohol and caffeine for a while - probably not possible with the holidays, but worth a try .

Sounds like sebacious cysts or another possibility are small kelloids - both are nothing to worry about and are very common.

I am aware that cardiac rehab and physical therapy may help patients with POTS. The one aspect where it's not clear how/if exercise helps is fatigue. As POTS is not one disease but a spectrum of conditions, if chronic fatigue is the major issue, the exercise regimen might be different than if someone has POTS but without the overwhelming fatigue. This is a huge area of research, and I hope that we get more knowledge on the topic soon.

Like others, I am wondering why these "medical people" are jumping to such erroneous conclusion about the need for a pacemaker? They should know that a 30-day event monitor is used for a variety of reasons, including to capture episodes or arrhythmia that the patient is experiencing, but that is not being captured by routine EKG or a Holter.

Amy, exactly; the autonomic disorders are not new to the general population, but are new as a group of medically-identified disorders to the medical community.

I agree with Mark. Internal medicine physicians have more experience in dealing with medical issues of patients with unusual chronic illnesses. Furthermore, I would add that finding a physician who is not nearing retirement (nothing personal against old-timers here ) is also a good idea. It's been my experience that younger physicians have a higher probability of being educated/aware of POTS, NCS, etc. as legitimate diagnoses and a greater chance of researching these conditions through internet, etc. Older doctors tend to be "more set in their ways", more paternalistic, and more likely inclined to believe in the old school of thinking that if you're a symptomatic young woman (or man) with normal routine workup, then you must suffer from anxiety or stress. Best of luck in finding the right PCP!

Hi Mark, I hope I didn't offend you with my comment regarding the good news about surviving the crash and not being paralyzed. A few years ago (it may even be the same plane crash that you were involved in - I am not sure), there was a crash of a small plane with mostly physicians on board who were flying to attend a medical conference. I believe that a majority of them were killed, including one of my mentors - a very well-respected pediatrician and educator. A few physicians did survive the crash - you may be one of those who did! As to our profession, well, unfortunately, we have all witnessed "the good, the bad and the ugly", both on personal and professional level. When it comes to the autonomic disorders - a relatively new field of medicine and research- there is even more confusion and misconception than in those disorders that have been around for centuries. As such, there is a great shortage of physicians who understand or are interested in learning about dysautonomia. I hope you can find a team of physicians who are both competent and compassionate. Feel free to PM me any time.

Many times the doctors would temporarily use a small dose of benzodiazepines during the periods of starting or stopping SSRIs. This may be an option that your son can discuss with his doctors.

Trauma, injury and spinal surgery may precede the onset of dysautonomia in some people. Have you had a tilt table test done and what did it show? Have you had other autonomic tests to look for signs of autonomic neuropathy? Hyperadrenergic form occurs in about 10-20% of patients with dysautonomia and is sometimes associated with hypertension or hypertensive episodes superimposed on baseline hypotension. Have you tried any medications and were any of these helpful? I know it may seem like small comfort amidst your multiple diagnoses and health struggles, but the good news is that you survived the crash and are not para/quadriplegic. Best of luck to you in finding further answers!

What you describe is not seizures, and given that your friend was hospitalized for seizures, anxiety over a seizure disorder seems like a possible explanation for your symptoms. Furthermore, one cannot feel "bursts in the head" when one is having a real seizure. I think you can put your fears about seizures to rest.

I am sending you a pm.

Hi Michelle, I see you're dealing with more headaches lately. Well, I think at this point, you will have to travel out of town to a specialized headache center to see a neurologist who specializes in headaches. You may only need to see them once for a consultation, and then you can followup with your local physicians. To answer your questions about ibuprofen, yes, you can get a medication overuse headache (MOH) from taking ibuprofen non-stop for 9 days. This is why we recommend taking it not more than 2-3 times per week rather than daily. Secondly, ibuprofen is a drug that promotes salt absorption from kidneys, thus improving blood volume and probably helping with presyncope and energy. This may be why going off of it results in the reversal of its beneficial side effects, and thus, causes you to have more dizziness and presyncope. Finally, if you were my patient, I'd start you on topamax daily. Another option is a trial of a low dose of elavil at nighttime for headache prevention. For acute headaches, you may still use ibuprofen, but not on a daily basis. There is also an option of getting IV medications for acute headache, but that would require you either going to an urgent care center with your doctor's prescription and specific instructions or going to ER - something I am sure you'd want to avoid. I am sorry that you got fired by your doctor because of your multiple medication allergies. I find this despicable and extremely unethical. Best of luck to you!

Sorry you're having troubles. This was probably discussed by your doctors, but could one of the medications that you're taking cause non-sustained VT? Sometimes new things appear because things progress, and sometimes because the medications used to treat the original problem cause a new one. If you've never experienced this type of arrhythmia before, going over your medications' side effect profile with a cardiologist and a pharmacist may be very helpful. I also have not seen patients with POTS having problems with ventricular arrhythmia from POTS, so I agree that you may be experiencing another condition, in addition to POTS. I hope you're able to find an EP who is willing to go the extra-mile and figure this all out.

I've never heard beta blockers requiring supplementation with melatonin or coenzyme Q - a supplement which, by the way, is very expensive. Regarding, ginseng and ginko, I would exercise caution with these as these are stimulants that can increase heart rate and blood pressure and cause palpitations in SOME people. This may not be the case for you, but still worth thinking about. Ginko is also a natural blood thinner and is not recommended for people on aspirin or those with a tendency to bleed.

At this time, it is hard to say whether this phenomenon is POTS-related. Rather, it is definitely a migraine-related occurrence and a very common one. I hear this all the time from migraine sufferers. Even though I think you did not experience a headache, it is quite possible that you've experienced a migraine-related symptomatology. I would venture to say that based on the knowledge that we have available from disorders such as migraine and fibromyalgia, there may be a general sensitization of the brain and the brainstem in these disorders, whereas visual - or auditory, or olfactory - stimuli activate the pathways in the brain that result in symptoms that you describe. In fact, the most advanced neuroimaging that we have available revealed that in migraine sufferers, occipital cortex - part of the brain responsible for vision - is functioning differently than in people who do not have migraine. We should definitely have more studies on POTS patients.

I wouldn't jump to the conclusion that the doctor "had fallen from grace" . A few possible explanations may be that: his practice is full -i.e. he is not taking new patients; he does not take the health insurance that your brother carries; he may not feel comfortable taking care of another family member; he may not feel knowledgeable in exploring the kind of symptoms/problems that your brother is experiencing. I think it would be helpful to you to ask the physician or the office directly the reason why your brother cannot be treated there, as well as perhaps, ask what other physician he can be referred to for an evaluation.

I am not sure where your doctor is getting these facts. At this point, research has not shown any connection between POTS and ADHD. Attention and concentration problems can occur in POTS as possible manifestations of decreased cerebral perfusion or perhaps, an underlining fatigue, but these symptoms do not constitute a diagnosis of ADHD by any criteria. I think that there are many misconceptions about POTS in the medical community, and this may be one of these. I would say that based on the current literature and the experience of top autonomic specialists, there is no evidence that ADHD is more prevalent in POTS patients than in general population.