doctorguest

I am just curious based on what blood work and what symptoms did the doctor make a diagnosis of mitochondrial disease. Do you know what type of blood tests came back abnormal for you? It seems that this is just such an illusive disease and diagnosis and that many other patients with various illnesses could qualify for such diagnosis as well.

Adria, it's great to hear that your symptoms are better! I am curious as to how you or your doctor arrived at this combo of medications and supplements? When did you start taking Mestinon in relationship to your improvement? I am suspecting that most of your improvement may have been due to Mestinon, but perhaps it's a combination of things that are working for you. Regardless, congratulations!

Results are within the normal limits.

Quite honestly, your TTT numbers are not that impressive and may in fact occur in someone who is healthy, without POTS. Isuprel increases heart rate for everyone, so a HR of 150 after infusion is not all that unusual. Essentially, after 20 min of tilt (without medications), your heart rate went from 70-80 bpm to 90-110 bpm - hardly impressive and in fact, not more than 30 bpm that is required for a strict criteria of POTS diagnosis. Regardless, if you are symptomatic and everything else "fits", you may still have "mild" POTS, even with these unimpressive numbers.

Subtr4ct, No, I actually don't think that low homocysteine is a serious cause for concern, but I would defer to a hematologist for further explanation and reassurance. In fact, it's the elevated, not low, level of homocysteine that is recognized by the medical community as a problem due to several studies demonstrating that elevated homocysteine level is associated with a higher risk of stroke, cardiovascular disease and dementia. What relevance, if any, a low homocysteine level has for your wife's condition is difficult to assess - this is why I think a consultation with a hematologist might shed some light on this issue or put it to rest, if they feel that a low value has no impact on her condition. Often, when one is faced with a thorough evaluation for a condition with various non-specific and seemingly unrelated manifestations, such as that of autonomic dysfunction, one or more blood tests are bound to fall outside of the normal range that a particular lab uses. The job of a clinician then becomes to separate those "nonspecific" abnormalities from those abnormal tests that ARE relevant to the clinical presentation of a patient. We see this all the time, particularly with cholesterol levels, where some people seem to have a very low total cholesterol level; a high cholesterol is definitely a cause of concern and requires treatment, but a low cholesterol level most of the time does not require any further action, though it is still considered an abnormal value. It may be that a low homocysteine level falls into the same category of abnormal findings as a low cholesterol. Keep us posted when/if you see a hematologist for further discussion!

You presented a very good hypothesis and references and have obviously done your research on the topic (perhaps you're a researcher yourself). I would be cautious, however, extrapolating studies on autistic children to patients with autonomic disorders. It's true that there are common themes/trends in mechanisms and pathophysiology of a variety of processes and disorders, which are often unrelated, but we just can't assume that a mechanism is common to both conditions, until and unless there is clear evidence that this is the case. In addition, I don't think that, based on the current knowledge (or lack thereof , depending on how you look at it), there is a connection between POTS and low homocysteine level in patients. This may be an unrelated problem that your wife is experiencing, one that needs further evaluation from a hematologist.

The key to trying SSRIs is that unless you try it, you wouldn't know how you react/tolerate this class of drugs. In addition, you may not be able to tolerate one type of SSRI, but may tolerate and respond very well to another. It's very individual and requires patience and a trial-and-error approach. For POTS, I would start an SSRI with a very low dose - a quarter of the smallest adult dose - and increase as tolerated. It does require 2-4 weeks for SSRIs to produce a noticable effect, but if you're feeling very sick after a few days taking it (usually 3-5 days for my patients), this is when I either decrease the dose or try another SSRI. This is just MY way of dealing with SSRIs for POTS, and your doctors may have other ways/methods for working with these medications. I will say that there are some people who cannot tolerate any SSRIs, even at very small doses. This may be due to the type of genetic phenotype they have, and hopefully, in the future, we may be able to test for these genetic markers in order to stratify the SSRI responders from the non-responders, but until that time, a good old-fashioned trial-and-error method is all we have to offer to our patients. Good luck!

Mary, I think there are enough symptoms that you describe the do make one suspicious for some type of autonomic dysfunction. Clearly, you had symptoms of orthostatic intolerance during your tilt, and although the numbers are not typical, POTS COULD still be your diagnosis. There are 2 ways to proceed at this point: one would be to get a referral to a major center for autonomic disorders where they could run other tests of the ANS to arrive at a diagnosis. This may require travel and expenses, depending on where you live. Another option is to treat you as if you do have POTS, even though the TTT results are inconclusive. If you get BP spikes, then maybe a beta blocker is a good choice to start with. Your treating physician should come up with a plan, regardless of what the test results show. After all, we treat people, not numbers . Good luck to you! I am positive that you'll get better with the right medications on board.

Besides feeling anxious, what other symptoms did you experience while tilted? Were you off all medications that day? I tend to agree with your doctor that the numbers by themselves are not typical of POTS or NCS. Besides autonomic dysfunction, there are many other things that could cause your symptoms, some of which has already been mentioned by others (i.e. thyroid). Also, depending on what age you are, menopause or peri-menopause may also be cause; thus, if you're between 40-50 years of age, it's important to check the levels of certain hormones, and I hope your doctor has done it. Other labs that come to mind are complete blood count, electrolyte levels, thyroid function tests, vitamin B12 level and morning cortisol level. Finally, and most importantly (after reading your second post), have you had a Holter monitor and an event monitor that recorded your heart rate/rhythm before you pass out? This would be very helpful to evaluate for a possibility of any heart arrhythmia as a cause of fainting and other symptoms. I am assuming that the cardiologists have done this, as it's their "bread and butter", so-to-speak.

Hi Angela, Congratulations on your engagement! I definitely agree with your cardiologist. Anyone with POTS or SVT or another type of chronic condition should be followed by a high-risk OB in addition to the regular OB and your treating cardiologist. High-risk OBs have more experience with medications in pregnancy and are much more lenient than other physicians in terms of allowing and managing medications in pregnancy. There is no published scientific data on pregnancy in POTS despite the anecdotal reports from the autonomic specialists who tend to say that many patients feel better in pregnancy. This by no means guarantees anyone that they would fall into that category, so one should be prepared for various scenarios - and this applies to healthy women as well! Having said that, you should find good doctors in your area ahead of time whom you would feel comfortable with to interact when you do become pregnant. Good luck to you!

I agree with the ER doctor that this minimal elevation in troponin is not indicative of a heart attack, but I think you're right to schedule a visit with the cardiologist to further discuss your chest pain. I have seen these mild abnormalities in troponin, most often in those with kidney disease. Assuming that you don't have it, I would suspect a lab error (yes, these do happen more than we'd like!) as another explanation. Your cardiologist will decide whether you need a repeat of troponin or not. If you continue to experience severe chest pain, I recommend going back to the ER without any reservations, but hopefully, your primary doctors are advising you already on that.

Dear Melissa, Hope the procedures are successful and that you get to go home soon. You are in my thoughts.

Thank you all for sharing your experience and voting. If anyone hasn't voted yet, please do!

First, it's important to determine why and for what symptoms Lamictal is considered as an option for you. Second, a psychopharmacologist should not be recommending medications to patients - yes, they know medications as it is their specialty, but they do not know how to use it clinically; this is the job of your treating physician. Having said that, I would not use Lamictal unless clearly indicated - i.e. if you have a seizure disorder or maybe as a mood stabilizing agent if you have bipolar disorder. Any other indications would be questionable at best. Lamictal is a good medication when used for proper reasons, but it is not without side effects, some of which can be serious. Certainly, I would not use Lamictal for dysautonomia symptoms, unless there are superimposed reasons for me to consider this medication. Hope this helps!

There is no harm in trying it, especially if your doctor gave you samples. You can try a small dose of Provigil 50 mg in the morning and then increase as tolerated, if you experience no side effects on a such small dose.

Thanks to those who voted - keep them coming! MomtoGuiliana, yes, you fit the category to vote. I specifically didn't mention "diagnosis of POTS" in the poll because often, it may take years to get a diagnosis of POTS from a doctor. The real marker is when you developed symptoms of POTS, so if you felt you had mild symptoms before the pregnancy, you definitely qualify to vote.

Agree with Flop about the D-dimer. I think the reason for ordering it was that the tachycardia was suspicious to the ER doctors for PE. I am glad that the CT of the chest ruled that out. Are you taking birth control pills? Have you taken any new medications or herbal supplements recently? These may also cause D-dimer elevations. Are you being treated with a beta blocker? It would be very helpful for the elevated heart rate and blood pressure.

There are patients whose symptoms got worse after they had ablations for SINUS tachycardia, which does not seem to be the case with you. The length of time between your ablation and increasing symptoms (which, from what I understand, is about 2 years, given the pregnancy and 1 year of lactation) does not suggest that ablation is the cause of your current flare-up, in my opinion. I think if ablation were the culprit, you would have been aware of it much sooner, especially during pregnancy, which in itself causes increased heart rate and palpitations. If you felt well up until now, I would think that the hormonal changes associated with stopping lactation and resuming regular cycles might be more to blame than the ablation, but you should ask your cardiologist, who knows your case, if he agrees with this theory.

Please, add comments about how you felt during pregnancy or anything else you might want to add. Thanks!

This is quite a common complaint in people without POTS. First of all, don't panic. Secondly, do you have numbness/pain/burning sensation in your other foot? It's true that diabetes is the number one cause of peripheral neuropathy in developed countries, but it presents in BOTH feet, not only on one side. Here are more viable diagnoses based on your description: 1. Local nerve damage - i.e. a branch of the nerve that supplies sensations to that part of the foot is locally damaged. Why would that be? Well, the common common cause is from wearing an uncomfortable pair of shoes and causing constant pressure or irritation of that portion of the nerve. 2. Do you have weakness in any part of that foot - i.e. are some of the muscles of the foot weak? You may not be able to assess that yourself, but a neurologist should be able to observe if this is indeed the case. This would signify a type of neuropathy involving the nerve that passes at the knee - called peroneal neuropathy. By the way, have you hit your knee recently? 3. Do you have back pain on that side? Is there a shooting or electrical type of pain that goes from your back down to that leg? This would indicate a problem with one of the lumbar disks of the spine and result in radiculopathy, like sciatica. One of these 3 possibilities above is likely responsible for your loss of sensation in the 2 toes. I recommend you see a neurologist, who will be able to evaluate your problem directly and come up with a treatment plan for you. Good luck!

Thank you all for your responses, and thanks, Emily, for posting the Newsweek article. Firewoman, no, I didn't walk the red carpet and didn't make any speeches, but I did get my point across to the doctors' community and did bring POTS to their attention. And in the end, it was great to see that these doctors got interested and voted the discussion as most valuable to THEM. Corina, this community is for US-licensed physicians, but I did hear that they are working on letting doctors from other countries join in the future.

Hi everyone, As you know, I am an advocate for patients with autonomic dysfunction, and I always try to educate my colleagues about these disorders. As I wrote in another post on fibromyalgia, I belong to a community of physicians who discuss various issues in medicine and patient care. I just recently joined that community and found what most of you already know - that many physicians are not educated on the issues of autonomic disorders. I have seen more than a few cases that other physicians post there that involve patients with POTS, NCS, etc., where doctors don't know how to approach their problems, or worse, where doctors think that patients' symptoms are "psychiatric" in nature. Well, a few weeks ago, the community had a contest where physicians submit cases/posts on various conditions and vote for whatever post is interesting/important/valuable to the medical community. I found a post on POTS treatment (written way before I joined there) where a very informative discussion took place on POTS and POTS treatment (again, not without some nasty comments from the non-believers). I nominated that case, and this is what I wrote in my nomination explanation: "After reviewing the postings, I've nominated the post on POTS treatment. I think the post raises awareness for a disabling neurologic disorder (POTS) that is commonly misdiagnosed and misunderstood. The patients with POTS, who are predominantly young women, often represent an under-served patient population, both in obtaining proper diagnosis and appropriate treatment, not unlike MS patients were some 40 years ago. The post illustrates confusion and skepticism that exist in the medical community with respect to a relatively new field of neurology, the autonomic disorders, and encourages further education and research among health care providers." Today I received a notification that this post on POTS treatment won the contest, and that both the author and I, as a nominator, are winners. Quite honestly, when I nominated that post, I didn't think doctors would be interested in this as there were other posts nominated about disorders that are more common and well-recognized. I was very pleasantly surprised when I saw how many doctors voted for the post on POTS. The medical community IS listening and taking notes. The care for patients with autonomic disorders WILL be better, and hopefully soon, nobody will have to be subjected to misdiagnosis, disbelief or ridicule for these disorders.

Sophia, thank you very much for posting the letters to the editor. I am on the physician's website where doctors have been discussing the article itself, obviously not without some nasty comments from the non-believers. Well, I just posted the link that you've provided - it will be nice for them to read "the other side of the coin".

It's sad to see so much negativity and questioning of whether fibromyalgia is "real" published in one article. Yet, the author did not include any new research about the difference in pain processing both peripherally and centrally in the brains of patients with fibromyalgia. I guess it's always easy to frown upon the pharmaceutical companies making money off of diseases, but it's not good journalism to present a one-sided view. http://www.nytimes.com/2008/01/14/health/1...amp;_r=1&hp

Allergies is a "relative" contraindication to beta-blockers use, not an absolute. Your allergist would need to determine whether you could still try a beta blocker. Inderal would not be a good choice for those with allergies because it blocks both b1 and b2 adrenergic receptors, and the respiratory system is full of b2 receptors. If you do get permission from your allergist to try a beta blocker, atenolol or metoprolol would be the ones to try. All beta and calcium channel blockers decrease blood pressure, so this is something to watch out for with NCS. There are also other preventative headache medications, besides beta and calcium channel blockers, but I am sure your doctor would discuss these with you when/if you exhaust her first choices. Good luck!