doctorguest

There is no evidence that POTS is associated with an increased risk of stroke. Just want to make it clear for others who may be reading this.

There may be a maternal inheritance to the autonomic dysfunction through the mitochondrial DNA which everyone inherits from their mothers. This has not been studied however, but mother-children patients affected by dysautonomia have been observed clinically. Additionally, there may be certain phenotypes (expression of specific genetic types) of beta-receptors that run in families that may predispose family members to hypotension and autonomic dysregulation. Large-scale studies that are heavily funded and supported by multiple academic centers would be required to provide further research in the genetic component of the autonomic disorders.

What was so great about medicine and doctors in 1800s? You think many things are not understood now, so imagine the fund of knowledge then?! You call an abnormal TTT a non-specific test, but actually it is clearly indicative of the autonomic dysfunction. If you want go further and seek out the cause of that, you may be disappointed - this is a relatively new area in medicine, with poor funds available for research. Since your dad had similar problems, there may be a genetic component, but here again there is a lot we don't have knowledge for. There have been some studies about a specific phenotype of beta receptors that may run in families and predispose one to conditions of low blood pressure and autonomic dysfunction. With an abnormal TTT and other tests of autonomic function, I don't think that Vanderbilt or Mayo Clinic physicians would conclude that you don't have a diagnosis or that "you're healthy".

Hi Radha, Before I reply, I again want to state that I don't know your case and don't know what type of medical conditions you have, so this is strictly my opinion. Olanzapine is from a class of medicaions called atypical antipsychotics. Olanzapine does have some benzodiazepine properties similar to xanax, valium, etc., but it is widely used in psychiatry, for example, for bipolar disorder among other psychiatric illnesses. If you and your doctor are considering olanzapine strictly for anxiety and adrenaline surgers, have you then exhausted choices from the benzodiazepine class? Xanax is not the only one - in fact, clonazepam is longer acting and more effective than xanax, and you can only take it once a day in the morning, but the effect will last all day. My point is that I would not use olanzapine on patients who do not have specific psychiatric illness that necessitates its use. Hope you can work it out with your doctror, Doctorguest

OK, sorry about this link not working. I got the link through my E-mail, then I copied and pasted it here. When I tested the link on this thread, it did work from my computer. Yes, PattiL, that's the article I was talking about. Thank you for fixing it. Hope others can access it as well and benefit from the information.

Sorry about the general page. Let's see if this link works. At the bottom of the page, choose any specialty and continue on to the discussion. http://www.medsitecme.com/(ylwr0amactpjti4...1//sponsor.aspx Emily, thank you for your words. I am sorry that you have been affected for so many years. I am glad you found a good ANS doctor who understands your needs.

Hi everyone, I received this by E-mail as part of the Continuous Medical Education (CME). I think it's great that there is more information for physicians to recognize and treat depression in patients with chronic illness. My hope is that better education on how to recognize and treat autonomic dysfunction becomes available for physicians in the future. http://www.medsitecme.com/(sadkgo2rzkcnno4...1//patient.aspx

Criteria for POTS, as defined by Dr. Low in the original article on POTS: 1. Increase in heart rate greater than or equal to 30 bpm within 5 min of standing or tilt 2. Heart rate of greater than or equal to 120 bpm within 5 min of standing or tilt 3. Orthostatic symptoms consistently develop POTS is a syndrome - a collection of symptoms - so orthostatic sympoms are needed to qualify for POTS. Symptoms need not be so disabling that one can't function, but may include very mild orthostatic intolerance to stress, such as prolonged standing, exertion, heat, meal, etc. If one has symptoms and increased heart rate of 30 bpm within 5 min of standing, but less than 120 bpm, then it's considered "mild POTS". One other thing that should be mentioned: keep in mind that this is a research criteria - the parameters used to define subjects (patients) as having POTS. In clinical world, things can be different, but in general this criteria is useful in diagnosis of POTS. Hope this answers your questions. Doctorguest

As others have mentioned, Neurontin is usually well-tolerated. Sedation and drowsiness are possible side effects, so starting out by taking it at nighttime is preferable to get your body adjusted.

Hi Michele, Others have mentioned that Celexa - which is a "relative" of Lexapro - was better tolerated. I've had the same experience where patients who couldn't tolerate Lexapro did better on Celexa. Regarding Lamictal, as you probably learned about it already, this is an anti-seizure medication which is also used in psychiatry as a mood-stabilizing agent. I have to admit - I haven't seen it being used for PMS or NCS, so as you said, I'd ask your doctor to explain thoroughly his reasons for considering these.

Hi Morgan, As you know, practices tend to vary depending on where you live or trained. I agree with you - Holter first, then event monitor. These tests are complementary and provide better information together than either one alone.

I understand that many doctors who know nothing about POTS would use "looks" as a component to their assessment. I also know that many of you (or most everyone) have been misdiagnosed with an anxiety disorder, at one point or another, and I am sorry that this has happened. I just think/hope that a researcher who is studying POTS and sees many POTS patients would not judge his patients and use the "you look good" as a compliment rather than a doubt of their illness.

Sometimes doctors get excited when they see an "unsual" case or presentation; they also feel happy, and at times surprised, when a patient with an illness that can impact many activities, does so well - like driving, working, etc. If he is a researcher that sees many POTS patients, it is probably a complement to hear from him that you look good and do things that are perhaps outside of the "norm" that he sees. I strongly doubt that he meant to discredit your struggles or your illness with his comments.

Hi Angela, I would not put too much weight on that one "possible" finding of a pause heard by a nurse. I am not trying to say that a nurse would not be competent to hear a pause - experienced nurses, especially in the cardiac units, are very knowledgeable and competent. Rather, because sometimes sinus arrhythmia - where inspiration causes a drop in venous return which can be accompanied by irregularities in the heart rhythm - can be normal. Additionally, you may have been holding your breath and not realizing yourself, which may also cause a small pause. Finally, if you have premature atrial beats - a very benign finding, partly caused by lack of sleep, physical stress and too much caffeine - it can often be associated with a pause. If you're worried, then getting another Holter monitor is reasonable.

Jacquie, it would help if you kept a record of your fluid intake and urine output for a few days to have the exact numbers for daily ins and outs. Regarding the midodrine, I suppose it could be possible because it's a vasoconstrictor and possibly could vasoconstrict arteries to the kidneys, thus decreasing glomerular filtration rate, and thus decreasing urine output. This is just a hypothetical speculation, however; more likely explanation could be dehydration. Those with autonomic dysfunction should aim to produce between 1,5 - 2 L per 24 hrs.

SNRI are not as "notorious" for weight gain as SSRIs, although all medications in that group can cause weight gain, as well as nausea, headaches, restlessness, etc. Some patients have no problem taking these, while others have all kinds of side effects. I've always been surprised how older patients seem to better tolerate these medications than younger ones - I haven't been able to explain that one yet. As for Cymbalta, it's somewhat like Effexor; it's been FDA approved a few years ago for treatment of diabetic peripheral neuropathy pain, and has been also used with good results in other types of pain syndromes, including fibromyalgia.

Hi Cathy, Usually, autonomic neuropathy causes numbness/tingling in the feet. If you have patches on both thighs that are numb, this can be caused by problems in the lumbar spine, nerve roots as they come out of the spinal cord, or femoral nerve (as in femoral neuropathy), although all of these condition commonly involve one side not both. I notice in your signature that you have paraneoplastic disease; I am just curious as to how this was diagnosed. Did you test positive for a specific antibody on the paraneoplastic panel?

Hi everyone, Just saw this post. I agree with Lois completely and with her doctor who said that the port and the pacer are a bad combination. Is it possible to take oral antibiotics instead of the IV? If IV is needed, is it possible to combine it with oral treatment so that IV infusion can take place several times per week, not daily, through a peripheral vein catheter? Is Lyme treatment producing any clinical and functional improvement in your health status and is it worth continuing? These are the questions that your cardiologist and your lyme doctor should be answering. I hope that you can find a solution that suits you best - it can be difficult to know what's best, and I agree with Lois again that a second or third opinion may be helpful in this situation.

SSRIs and other anti-depressants are notorious for causing weight gain. The least weight gain reported, and in some people causing actually weight loss, is with Welbutrin, Effexor and Prozac. Paxil, Zoloft and Celexa/Lexapro are known to have a higher incidence of weight gain as a side effect. I hope you and your doctor can figure out what works for you. Good luck!

Usually, SSRIs are used continuously, but for premenstrual dysphoric disorder (PMDD) it can be used for 2 weeks prior to the period. It may not be the best way to treat a POTS patient, however, because of the drug sensitivities and withdrawal effects, but women without POTS can use Prozac (Sarafem) on intermittent basis.

Hi Flop, I haven't read all the posts in this thread, and I may not have all the details from your discussion with your doctor regarding the wheelchair, except for your current post. This is a very personal decision, I think, because in the end, only you know what you can or cannot do. I understand your EP's concern about losing orthostatic tolerance further, but I also see your point about using the chair for a few hours a day to get you through your work day. I think that having the chair available to you at work, whether you choose/decide to use it or not, will probably provide psychological safety net on those days when you feel particulary bad. I believe that if you use it as needed and intermittently, then no deconditioning should result from this, especially since you're planning to continue exercising and be active in your non-working hours. Also, I am not sure what kind of job you're doing, but if it involves being on your feet a lot, then definitely you need to give yourself a rest for a few hours a day with the chair. I hope this was helpful, although I understand that you may be looking for a concrete answer "yes" or "no". I'd say that if you can manage without it, then don't use it. But, if you're someone who has frequent syncope and your job requires you to be standing or walking, then using it intermittently will likely be helpful to advance your career and keep your job, which I think are very important aspects to consider.

Yes, as people have mentioned here, this is very common in healthy people because the blood pressure make take a few seconds to adjust to the sudden change in position. We advise people to take time and change positions slowly rather than abruptly in order to prevent syncope.

Hi Angela, Hope you're feeling better today. As I told you before, I think that playing around with Florinef may have caused the syncope/presyncope that you're experiencing. This doesn't look like an easy situation - on one hand, beta-blockers are needed to control your tachycardia, and on another hand, the beta-blockers are inadvertently causing the hypotension. Thus, I can see how your doctors wanted to get Florinef on board to increase blood volume and hopefully, blood pressure. It looks like you're not getting that benefit that Florinef "should" provide, so I think your doctors are correct in trying to wean you off of it now. This issue ultimately will be what to do next - midodrine is one option that you said didn't give you any benefits. I wonder if Mestinone will be something they would try next. Hope you can get the help that you need soon