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doctorguest

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  1. Just like with any chronic medical condition, medications may need to be continued throughout pregnancy for women with POTS. What we know after several studies on the subject is that many women remain on beta blockers, Florinef, Middorine and SSRIs, which has no negative impact on their health or the health of the baby. As a rule, the least number of medications, preferably one, and the lowest dose should be used for pregnant women with medical conditions, including POTS. The fact that a woman takes medications before pregnancy should not be a factor against becoming pregnant if pregnancy is desired.
  2. Below is the letter I received today in response to my letter to Shire. Page 1 August 24, 2010 Ref: US10-010211 Subject: ProAmatine Dear Dr.________: Thank you for your recent medical information inquiry regarding ProAmatine. We understand that you have requested information on the discontinuation of ProAamatine. Shire will be discontinuing the sale of the branded drug, ProAmatine effective September 30, 2010. Shire acquired ProAmatine as a part of the acquisition of Roberts Pharma in 1999 and Shire conducted and completed the post marketing trials that the FDA required. The FDA, however, viewed these trials as inconclusive and required that additional trials be conducted for ProAmatine to maintain its marketing authorization. As a result, Shire elected to withdraw the product effective September 30, 2010 and notified the FDA in November 2009 and healthcare professionals earlier this year of this decision. Shire's withdrawal of the NDA was not related to any concerns regarding the safety of ProAmatine. We are sorry that this action may be affecting your patient?s treatment plan. As of this time, there are generic forms of midodrine hydrochloride tablets are available in the US that you may consider, as well as other therapies for treating orthostatic hypotension. The following is a short list of the manufacturers of generic midodrine hydrochloride: Mylan Labs Sandoz Apotex Upsher-Smith Impax Labs We regret any inconvenience that this may cause you and your patieints and hope that alternative therapies or options can be found. This enclosed information is supplied as a professional courtesy in response to your inquiry. It is intended to provide pertinent data that will assist you in forming your own conclusions and making your own decisions. This information is not intended to Page 2 advocate any indication, dosage, or other claim that is not covered in the enclosed package insert. Should you have any questions or need additional information, please contact us directly at 1-800-828-2088. Sincerely, Medical Affairs Associate
  3. Congratulations on becoming a mother! While I don't know the specifics of your C-section/POTS/current status, in general terms, recovery after a C-section for a healthy person is more difficult than recovery after a simple vaginal delivery. Add POTS to the mix and one can expect exacerbation of POTS symptoms. The good news is that blood clots in the lungs have been ruled out - this would be the main concern post-partum after a C-section. Current symptomatic management depends on whether you are breastfeeding or not - i.e. whether you're able to take medications. In any case, my advice is to increase hydration with Gatorade or Pedialyte, as well increasing salt intake above your pre-pregnancy amount. Remember blood loss is greater during a C-section than with a vaginal delivery; plus, most pregnant women develop anemia in their last trimester. With a combination of blood loss and anemia, I presume your blood volume is greatly reduced at this point, which may be causing current symptoms. In my opinion, this is a transient symptomatic worsening, and I am optimistic that your symptoms are temporary. Good luck and enjoy your precious baby! doctorguest
  4. There is currently a debate about a relationship between POTS and anxiety disorders. As someone here pointed out, the Baker institute researchers contend that these two disorders are on the same spectrum. However, more studies are coming out against it than for it. In fact, it's been shown by other researchers that patients with POTS DO NOT have a higher prevalence of anxiety disorders than the general population and that POTS and panic disorders have different symptoms and can be distinguished. Obviously, some patients have both POTS and panic disorder, in the same way as some patients have both POTS and Irritable Bowel Syndrome. However, at this point there is no scientific evidence to claim that patients with POTS are more likely to have anxiety or panic disorders. Yes, some well-known ANS specialists claim through their obvservation that patients with POTS have increased somatic vigilance and appear to be anxious, but that does amount to scientific evidence - rather it is anecdotal evidence that has not been substantiated in clinical studies. Until such studies appear in literature, nobody can conclusively state that POTS and anxiety disorders are related.
  5. It's great that you found a doctor who is knowledgeable about ANS disorder. Your concern about testing is valid. Her reason for testing an asymptomatic patient is unfortunately financial. If you or your insurance are paying, the doctor will be ordering. This is not to cast doubt on your doctor; rather, it is the financial predicament that many physicians in private practice find themselves these days. Understand that as a patient, it is ultimately YOUR decision whether to get tested or not. You might want to say to your doctor that you would "prefer" not to get tested right now that you're doing so well. Obtaining expensive tests that are unnecessary increases the cost of health care for everyone; this is partly why insurance companies try to contain the cost by denying others the testing or medications that IS necessary.
  6. Congratulations on making it through pregnancy and becoming a mother! You are right that there is no data available on the topic of POTS and pregnancy, which is why I encourage you and others to participate in a study, currently in progress, addressing POTS and pregnancy. When you're feeling better and have some free time, please consider filling out a questionnaire. If you are interested, e-mail me at doctorguest@gmail.com.
  7. Just trying to resurrect this poll from the past. It would be great to have the 42 women who responded to this poll participate in a research project on POTS and pregnancy and explore this topic further. After this project is completed and results become available to the medical community, it would educate OB/GYNs, primary care doctors, cardiologists, neurologists, nurses and midwives, as well as help other women with POTS who are planning to have children. If you would like to participate in this important project, e-mail me at doctorguest@gmail.com. Thanks!
  8. Hello all, It has been a while since I posted the original message about a potential research project on POTS and pregnancy. I am happy to inform everyone who wanted to participate that we are finally ready to move forward with the project! To those who have replied to me in the past through e-mail - and to the new people who would like to participate in a research project on POTS and pregnancy (see description above) - please, e-mail me your name and address so that we could send you a short questionnaire to be filled out on an anonymous basis. My e-mail address is: doctorguest@gmail.com Sincerely, doctorguest
  9. Katherine, I am very sorry for the tragedy that your family is experiencing. Please accept my condolences. As to whether POTS played a role in this tragic outcome, I completely agree with Flop on her statements. It appears, at least anecdotally, that there is no - or should not be - a connection between POTS and pre-eclampsia/eclampsia. However, as you pointed out, this subject has not been studied, and this is exactly why I am now working on getting funding for a research project that addresses POTS and pregnancy. I hope your sister has a speedy physical recovery; the grieving will, undoubtedly, take a much longer time.
  10. Dear jolinshope, Thank you for sharing your story. I am glad you got help with the diagnosis and treatment at Vanderbilt University. As you stated, the diagnosis made by Dr. Biaggioni was baroreflex failure/hyperadrengergic dysautonomia/hyper-reflexia/SVT. This diagnosis is not the same as "hyperadrenergic POTS". In fact, it refers to a completely different form and type of dysautonomia. Let me assure you and others that there are plenty of people with hyperadrenergic POTS who are greatly helped by either beta blockers, midodrine, florinef, SSRIs or a combination of these. Unfortunately, since you do not have POTS but another form of dysautonomia, these medications weren't a viable option to address your blood pressure and heart rate abnormalities, and I personally would not have used any of these medications in a patient with your type of diagnosis. It is clear from your history that "all dysautonomias are not created equal" and that the term itself encompasses a variety of disorders of the autonomic nervous system with different causes, mechanisms and presentations. You are probably aware that most patients with POTS - whether hyperadrenergic or not - do not develop such severe blood pressure and heart rate variations to the point of coding and requiring ICU hospitalization, and thus, most POTS patients should not be concerned about their current medication regimen if it consists of SSRIs or other medications that were contraindicated in your case. I wish you all the best in your rehabilitation. Good luck! drg
  11. Agree with Nina. Sometimes office staff does not directly or immediately notify the doctor that a patient called. Or they notify by a method that is not easily accessible by a doctor, like leaving a written message in their mailbox at an office, where, for example, they only work a few times a week. Many doctors work at various locations, including several offices and/or hospitals, and thus, may not be able to receive non-urgent messages in a timely manner. Of course, if your matter is urgent, then a physician should be immediately accessible to the office staff via pager or cell phone. Another problem is the "out-of-town" specialists. It is sometimes difficult to coordinate care with local doctors, but of course, not impossible. I would not dismiss your specialist because of this incident, though it's understandably frustrating; rather, I'd discuss this with her at your next appointment, emphasizing the need to reach her when urgent matters arise and asking her how to best accomplish this in the future.
  12. Mack's mom, what you are referring to you is one study from Vanderbilt that showed that some patients have both mast cell disorder and hyperadrenergic POTS. http://www.ncbi.nlm.nih.gov/pubmed/1571078...Pubmed_RVDocSum In this case, because of the mast cell disorder, not hyperadrenergic POTS, the use of beta blockers is not recommended and can actually be dangerous (because beta blockers cause constriction of the airways, and because they also interfere with the effects of the Epi-pen, should there be a need to use one). Otherwise, if you don't have a mast cell disorder, beta blockers are perfectly safe and very useful in patients with POTS, including hyperadrenergic type. If you reacted to beta-blockers with anaphylaxis, the simplest explanation may be that you're just allergic to that class of medications. Other possible explanations may be that you have an underlining asthma, an attack of which was precipitated by the beta-blocker, or that you, in fact, may have a mast cell activation disorder, but remember, that this has to be diagnosed via urine test positive for a specific substance, called methylhistamine. Otherwise, flushing by itself does not constitute a diagnosis of mast cell activation disorder because it is a common sign of POTS. As to why emotions can result in syncope or tachycardic spell in patients with POTS or NCS, the general explanation that I can offer is that emotions, an internal stimuli, affect the autonomic nervous system in the same way as heat or gravity, external stimuli, do. Healthy people react to strong emotions by increasing heart rate and blood pressure, but in patients with POTS, there may be an exaggerated heart rate response, while in patients with NCS, the baroreceptors sense the increase in blood pressure and paradoxically over-react by causing a precipitous drop in blood pressure with a resultant syncope. Of course, the mechanism is more complicated than this, involving communication between the brain, the brainstem, the peripheral autonomic nervous system, various neurotransmitters, including norepinephrine and epinephrine, as well as the baroreceptors of the cardiovascular system and the peripheral blood vessels. If any of these components are abnormal, either in function or structure, the entire system will malfunction, and the response to common internal or external stimuli will no longer be normal, causing symptoms and signs of a disorder.
  13. Tearose, on further recall, I remember having a similar debate on SSRI use in the past, where, if I remember correctly, you seemed to have a perception that SSRIs are dangerous medications. In any case, I will not discuss this issue any further because there is nothing to debate about. You seem to want to contradict my statements, first on what I posted about treatment options being the same in patients with various mechanisms or etiology of POTS, and then bringing up the issue of SSRIs which have been widely used in all fields of medicine, including in patients with autonomic disorders, with success in a good portion of these patients. Then you also seem to sway my carefully-phrased statements about SSRIs and other matters - I say "carefully-phrased" because research is still in progress on many issues pertaining to autonomic disorders and their treatment - to blatant statements of "SSRI's being the way to go, or the gold standard", phrases that I never used. Then you again attempt to question and contradict me further on my statements regarding Parkinson's disease and its treatment, somehow again including SSRIs in the discussion. I have responded to the original poster with the information that explains that whether her POTS is hyperadrenergic or not makes little difference in clinical practice, especially pertaining to treatment, never mentioning SSRIs or any other class of medications. You seemed compelled to challenge me on my statement, bringing in the issue of SSRIs, which was not the point of my post to the woman who started this thread. In brief, I understand you are against SSRIs, or perhaps, other or all medications and have not used these yourself, whether under advice of your physicians or because of your own personal reasons, but I think that you're doing a disservice by applying your personal experience - which is based on only your own case - to other patients with the same diagnosis. Let people discuss their own treatment plan with their treating physician, without skewing their views by making statements how SSRIs are contraindicated, risky, dangerous, contraversial, etc. Pat57, emotions, including anxiety, can certainly trigger a syncope or a tachycardic spell in those who have NCS, POTS, etc., but in people without these disorders, it should not pose a major problem (this, of course, excludes those who faint only in specific situations, like at the sight of blood, for example).
  14. If you read my original post, you will see that I didn't say that treatment is the same for all patients with POTS. What I did say, based on the current research studies, clinical experience of the academic institutions that treat and research POTS and my own training and clinical experience with POTS patients, that treatment options available today are the same for all forms of POTS. In fact, you may be shocked to learn that the same treatment choices are also used in more aggressive forms of the autonomic disorders, like Multiple System Atrophy or Parkinson's Disease. What the term "treatment options" means is that the choices from which your doctor selects a treatment for you are the same, regardless of whether your POTS is post-viral, genetic, hyperadrenergic, neuropathic, low-flow, high-flow, etc. These distinctions in POTS forms are made by researchers and some clinicians in order to better classify the etiology of POTS and to understand its various mechanisms, and not for therapeutic purposes. Of note, is that you talk about POTS being triggered by anxiety or depression in some people, a statement which has absolutely no basis or evidence, as POTS is not triggered by any of these factors. Rather, both anxiety or depression can either be one of the various manifestations of POTS or occur as co-morbidities, which often accompany many other chronic disorders.
  15. Just in case anyone is taking SSRIs or SNRIs and have hyperadrenergic POTS and reading this, this is perfectly OK, as these medications ARE NOT contraindicated in hyperadrenergic POTS. Tearose, I don't think you fully understand the issue of neurotransmitters and the use of SSRIs. Those who take SSRIs for POTS or other conditions do not necessarily have high or low serotonin levels, but are greatly helped by SSRIs for all kinds of conditions - from depression/anxiety to pain to GI motility disorders to low blood pressure and others. SSRIs may not have been recommended to you by your doctors because of your specific situation, but that does not mean that this is the case with all patients with hyperadrenergic POTS.
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