MomtoGiuliana

Morgan--I am sorry for your loss of your friend. You will be in my thoughts. Katherine

friday Again, so sorry for your difficulties! The beta blocker should not be causing the CHANGE in heart rate from sitting to standing, but it still could be playing a role overall (in your reduced heart rate). Here's an odd thing I had never heard before. I saw my electrophysiologist the other day for a 6-month check up and he told me that he has seen many POTS patients go from tachycardia and high bp on standing to brachycardia and low bp on standing--the brachy and low bp coming on later on in the cycle of the condition. He told me this b/c recently I have been having low bp. I have always had low bp, except post partum it went up along with the whole POTS thing. I thought (and still suspect) my body is now adjusting back to its pre-preg condition. However, he suggested that I could be moving on to the next stage of this kind of high bp POTS--having low bp. Since I am on a beta blocker, he wants to keep a close eye on these possible changes. It's a good idea probably to keep a record of your hr and bp and bring those to your prescribing doctor so that you can adjust the beta blocker appropriately if need be. BTW, the good news is that he still maintains that the majority of POTS patients eventually recover to a stable (maybe not totally well) level of function. The bad news is that relapses can occur. Nothing new there, but this is just something else he stated to me the other day. Katherine

One glass of wine can bring on POTS symptoms for me. I can actually feel the blood draining from my upper body after I drink alcohol. So I avoid it! Over time this has gotten less pronounced though.

Hi friday no, I don't get IV therapy anymore. I had it several times during pregnancy and post partum when I was undiagnosed, but sick with POTS. That's where my experience with it comes. I always felt like a new person afterwards--although no one knew why it was helping. Yes, it was covered by my insurance as part of pre-natal care. I had great coverage for pre-natal care. Salt tablets provide a delayed relief, and not as much relief, perhaps, for someone pretty ill with POTS. But, have you tried taking salt tablets for several days prior to the start of your period--or stepping up your salt intake at that time? That's what my doctor continues to recommend that I do, since I sometimes feel crappy right after my period. Hopefully some others with more experience with IV therapy will respond too. Sorry you are having such a rough time. Katherine

In my experience, the relief of symptoms comes much faster. For some people, salt tablets maybe don't help at all at times--whereas the IV does give temporary relief? I think the risks of taking salt tablets is far lower than the risks (which are not high in most cases) associated with IV therapy. Katherine

Runnergirl--I couldn't agree more. There is a controversial (to say the least) diagnosis called Wilson's syndrome. It's basically "hypothyroidism without the lab values to support the diagnosis". It has resulted in inappropriate prescriptions of synthroid and morbidity and mortality associated with that. I think, regarding doubt of thyroid patients about their doctors (ramakentesh's last post), that some to many doctors still rely completely on the TSH and keeping it in the normal range, with no regard to attendant symptoms. Katherine

geneva--it does seem like a big deal to me! I copied this article and sent it to a bunch of friends and family last night as part of my on-going education crusade You're welcome tearose. I hate all that registration hassle and I figured I'd make it easier for anyone who may not read the Post on-line already. Katherine

So sorry to hear your news. For now you need to rest and focus on taking care of yourself. But, I so understand your desires and feelings of sadness. I believe that for nearly every challenge in life there IS a solution. Things might not work out as you planned, but there is often more than one way to realize a goal. Or, other opportunites arise as previous opportunities evaporate. I have one daughter, but will not have any more biological children. I believe it is too risky for me being that I am over 35 and I had a very difficult pregnancy due to POTS the first time. Sometimes I feel sad about this reality, even though it is in the best interest of my health. Adoption is always there as an option, as is foster care, for me. There are many needy children on this planet, in our communites, sad but true. Sending healing thoughts your way. Take care, Katherine

Thanks for posting this! Here's the article, in case you don't want to go to the effort to register. A Puzzle in the Shape of a Girl By John Kelly Wednesday, December 15, 2004; Page C12 Elise seemed to be just a particularly unlucky little girl, stricken by a variety of unrelated ailments. But what if they weren't unrelated at all? Here's a look at a medical mystery, solved at Children's Hospital. The first symptoms: Columbia's Elise Smith is 14 now. When she was in kindergarten, she regularly complained of stomachaches. When doctors examined her, they found nothing abnormal. Eventually, though, Elise was unable to move her bowels. She grew distended and experienced abdominal pains. Taking regular doses of a laxative and a stool softener provided some relief but did not eliminate the problem. Because Elise couldn't reliably clear out her system from the bottom end, she would reflux at the top end, vomiting after she experienced spasms in her esophagus. As long as she could keep her system relatively empty, with laxatives and enemas, she was fine. The second symptoms: When she was a little older, Elise started having an alarming reaction to exercise. When running down a basketball court, she would turn beet red and get short of breath. Occasionally, she would faint. It was assumed that this was due to the asthma that Elise suffered from, but treating her with an inhaler did little to alleviate the symptoms. Sometimes, for no apparent reason, her heart would race, a condition known as tachycardia. At the same time, her blood pressure would drop precipitously. Doctors could find nothing mechanically wrong with her heart. The test: For years, Elise saw various pediatricians and specialists. Then, after her mother started working as a nurse at Children's Hospital, she turned to Children's and Jeffrey Moak, director of electrophysiology and pacing at the hospital. Dr. Moak scheduled Elise for an unusual test. She was strapped in a supine position -- on her back -- onto a special table. An IV was inserted into her wrist to monitor arterial blood pressure; electrocardiogram leads were connected to her chest to monitor her heartbeat. As long as she was on her back, Elise was fine, but as Dr. Moak tilted the table to about 80 degrees -- raising Elise's upper body and lowering her lower body -- her blood pressure plummeted to 70 over 30. Eventually, she fainted. Dr. Moak quickly revived her with a liter of fluid. And then, said Elise's mother, Vannesia Smith, who had been watching the test, "he got all excited." Elise, he said, had classic symptoms of a little-understood ailment. But even more encouraging: "He said, 'I know how to fix her.' " The syndrome: Dr. Moak deduced that Elise had a problem with her autonomic nervous system. The autonomic system, also known as the involuntary nervous system, runs all the parts of your body that you don't need to think about. You don't need to command your heart to beat or your stomach to digest food. These things happen automatically, courtesy of the signals the autonomic system is continually sending out. Elise's autonomic nervous system was out of whack. When she was sitting or standing, blood pooled in her lower extremities. A normal autonomic system makes adjustments, signaling the veins in the legs to constrict and force more blood up to the heart. Instead, Elise's heart was starved of blood and her blood pressure dropped. The official name for her condition is postural orthostatic tachycardia syndrome. Elise's gastrointestinal problems were related. The autonomic system also regulates motility, the spontaneous contraction of the intestines that moves food through them. The treatment: Doctors don't know what causes autonomic system disorders. It may be that the nervous system isn't sending messages to the veins in the lower extremities that tell the various blood vessels to constrict. It may be that the veins themselves are somehow defective. Research continues. In the meantime, Dr. Moak and others have been determining what medicines in which doses provide Elise the most relief. They think they've helped her reach an equilibrium. Inderal helps regulate her heartbeat. ProAmatine raises her low blood pressure. She takes MiraLax, a laxative, and Zelnorm, a drug that treats constipation. "For the most part, she's normal," Vannesia said. "As long as she stays on the [drug] regimen." She owes it to Children's. "They don't just accept that this is the most that a child can get out of life," Vannesia said. "You go here and hit a wall, then you come back and try something else." Putting It Together "It truly was a mystery," Vannesia said of Elise's problems. The family had been on a roller coaster for years, treating various symptoms in ways that would then cause unforeseen problems. Dr. Moak and his colleagues at Children's Hospital put it all together. "If you can tell the family that it's all part of the same disease entity, it provides a lot of reassurance," Dr. Moak said. My e-mail: kellyj@washpost.com

Hi again Beverly The only comment I have is that if she has only been taking it for 5 days then it could take a while longer for side effects to subside. I also had uncomfortable side effects with the beta blocker when I started--mostly depression in my case. This lifted after maybe three weeks. That's one of the many frustrating aspects of this condition--having to wait and see and manage with uncomfortable side effects, until you find a treatment that is helpful. I think it is even harder to sort out what is a side effect and what is POTS, too, when you are already very symptomatic with POTS. Beta blockers are very helpful for POTS if your blood pressure is not low. Many of us have found a great deal of relief with this medication. For that reason, it makes sense for Nicole to stick to a trial run and see if it will start to help. You might consider consulting with the prescribing doctor regarding what length of time to continue a trial run, if you haven't! Take good care. Hope Nicole continues to see improvement. Katherine

Hi Beverly What kind of beta blocker is she taking? I don't know if I am explaining this correctly, but my understanding about pindolol, the beta blocker I take in small amounts, is that while it blocks catecholomines, it also stimulates beta-receptors. My endocrinologist suggested that pindolol could be augmenting tremors I was having for this reason. Here is the only quote I can find on this: "Some beta-blockers, such as pindolol and acebutolol, also have beta-agonist properties. While their agonist property is weaker than that of catecholamines, they are capable of stimulating beta-receptors, especially when catecholamine levels are low. These agents are said to have intrinsic sympathomimetic activity; this agonist property is protective in overdoses. " http://www.emedicine.com/emerg/topic59.htm It also takes awhile to adjust to a beta blocker. She may need to try it for a week or more and then evaluate. Is she checking bp and heart rate a couple times a day while on it? I think that is helpful too. You can bring that data along with a description of symptoms to the prescribing doctor so that he or she can help you evaluate its efficacy/effects and whether the dosage or the type of beta blocker should be changed. The only other thought I have is that I think it may be important to try to take a consistent dosage for a week or more instead of stopping and starting (it was hard to tell from your post, but it sounds like she may be taking it some days and not other days and at different amounts) if you want to evaluate how helpful it is. But, I also know (and opus also mentioned) that many POTS patients use beta-blockers on an as-needed basis. As Rita said though, beta blocker usage is ideally done under the supervision of a doctor. While generally considered a very safe drug, abrupt stopping can cause dangerous side-effects in some people. Take care--both of you, Katherine

Shows how vital a forum like this is, particularly for women experiencing isolating chronic illness. Thanks Briarrose for sharing this.

I am also not as fussy, but having two dogs means lots of cleanup. My husband sweeps the floor every day. I use a microfiber broom/mop (like the swiffer that is mentioned)--cleans well with minimal effort. I also SIT on the floor to clean, if I have to.

All of those symptoms are POTS symptoms, and I have had similar cascading of symptoms like that (where one gets started and then another--kind of like a massive, lengthy "attack", one symptom seemingly building on another), although not exactly as you describe. Can you talk to a doctor about these episodes soon? Have you had a holter monitor during such events? What do you do while having these episodes? Is there anything that helps stop them? Do you think panic could be playing a role (many POTS patients have "panic" attacks)? Take care, Katherine

ramakentesh--exactly what I was trying to say--"Most endocrinologist will accept the possibility of subclinical hypothyroidism but not subclinical hyperthyroidism." I think it's good to ask for the panel but if your TSH is above 0.3, I think you can be very assured you do not have hyperthyroidism. If your TSH is less than 1.0 it would make sense to keep an eye on it once in awhile to make sure nothing is developing, I would guess. I agree with calypso that other metabolic causes would be worth looking into if you are losing a lot of weight. But, also keep in mind that weight loss is common with POTS flare ups. Katherine

I also have Hashimoto's as well as POTS. Everyone has made good points. POTS symptoms and hyperthyroid symptoms can be similar--e.g., tremors, tachycardia, feeling over-heated, weight-loss. Normal TSH is a range of values, but what is normal for one individual will not be for another. I feel best when my TSH is below 2.0. If your TSH is on the high end of normal, some endos will do a trial treatment to see if that helps your symptoms (without bringing your TSH below normal). This would be after also looking at a thyroid panel--not just the TSH. I have had rather variable thyroid activity since diagnosis. This worsened during pregnancy and post partum, and I had to have a few readjustments. I am sure this played a role in my POTS symptoms. If you have POTS, I think a doctor will be even more cautious in increasing your dosage to bring TSH down, if it is already in the "normal" range. Katherine

This is off-topic, I know. You can delete it if you need to Michelle! This is in response to Merrill's comment about "bulemic shopping" and it is relevant to the season, and to a drug class some of us use, anyway! Briarrose--I know I am treading on your turf--I apologize. Katherine Public release date: 16-Jul-2003 Contact: Michelle Brandt mbrandt@stanford.edu 650-723-0272 Stanford University Medical Center Antidepressant helps alleviate compulsive shopping disorder, Stanford researchers find STANFORD, Calif. - While a trip to the mall may mean a cute sweater or new CD for most of us, it has ominous implications for the thousands of Americans who suffer from compulsive shopping disorder, a condition marked by binge shopping and subsequent financial hardship. Now Stanford University Medical Center researchers have found that a drug commonly prescribed as an antidepressant may be able to curb the uncontrollable shopping urges. In a study appearing in the July issue of the Journal of Clinical Psychiatry, patients taking citalopram, a selective serotonin reuptake inhibitor that is approved for use as an antidepressant, scored lower on a scale that measures compulsive shopping tendencies than those on a placebo. The majority of patients using the medication rated themselves "very much improved" or "much improved" and reported a loss of interest in shopping. "I'm very excited about the dramatic response from people who had been suffering for decades," said Lorrin Koran, MD, professor of psychiatry and behavioral sciences and lead author of the study. "My hope is that people with this disorder will become aware that it's treatable and they don't have to suffer." Compulsive shopping disorder, which is estimated to affect between 2 and 8 percent of the U.S. population, is categorized by preoccupation with shopping for unneeded items and the inability to resist purchasing such items. Although some people may scoff at the notion of shopping being considered an illness, Koran said this is a very real disorder. It is common for sufferers to wind up with closets or rooms filled with unwanted purchases (one study participant had purchased more than 2,000 wrenches; another owned 55 cameras), damage relationships by lying to loved ones about their purchases and rack up thousands of dollars in debt. "Compulsive shopping leads to serious psychological, financial and family problems including depression, overwhelming debt and the breakup of relationships," Koran said. "People don't realize the extent of damage it does to the sufferer." Earlier studies suggested that the class of medications known as SSRIs might be effective for treating the disorder, but this had not been confirmed through a trial in which participants didn't know whether they were taking a placebo or the actual medication. Koran and his team sought to test citalopram - the newest SSRI on the market at that time - by conducting a seven-week, open-label trial followed by a nine-week, double-blind, placebo-controlled trial. The study involved 24 participants (23 women and one man) who were defined as suffering from compulsive shopping disorder based on their scores on the Yale-Brown Obsessive-Compulsive Scale-Shopping Version, or YBOCS-SV. Patients with scores above 17 are generally considered as suffering from compulsive shopping disorder. Most of the participants had engaged in compulsive shopping for at least a decade and all had experienced substantial financial or social adverse consequences of the disorder. During the open-label portion of the study, each participant took citalopram for seven weeks. By the end of the trial, the mean score of the YBOCS-SV decreased from 24.3 at baseline to 8.2. Fifteen patients (63 percent) were defined as responders - meaning they self-reported as being "very much improved" or "much improved" and had a 50 percent or greater decrease in their YBOCS-SV scores. Three subjects discontinued their use of the medication because of adverse events such as headache, rash or insomnia. The responders were randomized into the double-blind portion of the trial in which half took citalopram for nine weeks and the other half took a placebo. Five of the eight patients (63 percent) who took the placebo relapsed - indicated by self-reporting and YBOCS-SV scores above 17. The seven patients who continued the medication saw a decrease in their YBOCS-SV scores and also reported a continued loss of interest in shopping, cessation of browsing for items on the Internet or TV shopping channels, and the ability to shop normally without making impulsive purchases. "Patients said to me, 'I go to the shopping mall with my friends and I don't buy anything. I can't believe it and they can't believe it,'" reported Koran. "They've been doing this for decades and now their urge to shop is gone." Aside from the significant improvement in many patients, Koran said he was most amazed by the amount of time it took for patients to notice a difference in their behavior. "Patients improved within one or two weeks," he said. "I've never seen anything like it. No disorder I've treated has reacted like this." Koran said future studies are needed on the effectiveness of this drug and other SSRIs in treating the disorder. He is currently enrolling patients for a similar study using escitalopram, a new type of antidepressant that appears to have fewer side effects than others. Those interested in volunteering for the study can call Stanford's Obsessive-Compulsive and Related Disorders Research Program at 650-725-5180. ### Koran's co-authors include Helen Chuong, MS, research coordinator; Kim Bullock, MD, staff physician; and S. Christine Smith, MD, staff physician. The study was supported by a grant from Forest Laboratories, Inc, which manufactures citalopram. MEDIA CONTACT: Michelle Brandt, 650-723-0272 (mbrandt@stanford.edu) BROADCAST MEDIA CONTACT: M.A. Malone, 650-723-6912 (mamalone@stanford.edu) Stanford University Medical Center integrates research, medical education and patient care at its three institutions - Stanford University School of Medicine, Stanford Hospital & Clinics and Lucile Packard Children's Hospital at Stanford. For more information, please visit the Web site of the medical center's Office of Communication & Public Affairs at http://mednews.stanford.edu.

Merrill--hope you find the xanax works. I definitely found it useful to address short-term panic/anxiety--but everyone is different as we well know!! Bulemic shopper?--that reminds me of an article I saw recently that indicated that compulsive shopping is now a recognized and diagnosable disorder, found mostly in women--like compulsive over-eating. I think in our very materialistic society, such a dysfunction is often seen as a joke. I wonder sometimes if our hormones/chemistry are partly responsible? A vestige of our drive to gather and horde--especially in the winter months? I say this because I see this in myself at times and I wonder--where does this come from? Why do I want to buy this--I don't need it?! OK, this is WAY off topic, but your comment made me think of this article. Perhaps briarrose can find the latest study Katherine

calypso--I suspect many of us have had MRIs to rule out various neurological causes of our symptoms--MS, stroke, etc. Katherine

Angela Thanks for sharing this. POTS has been a profound experience for me too. Definitely humbling. I am sharply aware of my own mortality in a way I wasn't before. Times when I feel "well"/"normal" now (which is more and more frequent these days) feel like gifts. I pay a lot more attention to being in the moment and to details of the moment--whatever it is I am doing, mundane though it may be. To sum it up--I don't take some things for granted that I might have in the past. I have a new kind of compassion for the "disabled" among us. I have to say too that being involved in this forum has helped me to deal with my fears and has helped me to process what happened to me and also given me tools that I know will help, should I have any future health crises, not to mention, simply, for life's challenges in general. There are so many excellent role models here. Katherine

Merrill I just took the CD with me and they popped it in their player and gave me the headphones. You can't have anything made of metal in the machine, btw. It was an MRI of my brain. I had two after Giuliana was born to rule out MS. I had one several years prior to that of my pituitary gland to rule out problems there -- this was when I first was diagnosed with Hashimoto's. BTW, the machines I was put in were pretty closed, but there was some kind of mirror hanging above so that you could look up and see out, if you wanted to. I found it better just to close my eyes. Also, like Gena says, there is a little buzzer you can push at any time if you are getting uncomfortable. You do have to keep still during the imaging--but the technicians are generally very good and will tell you--"ok, you now need to keep still for the next 45 seconds"-- which helps a lot! Katherine

Merrill Wow, you have much to take in and think about. I am very impressed by your dispassionate/methodical approach to what you have learned. It certainly helps to know others on this forum with similar conditions who are also coping well. Regarding xanax/ativan--I have no idea. I have used xanax and found it helpful for short-term relief from terrible anxiety/panic that I used to get. I have no experience with other sedatives. Hopefully others can answer your question! Regarding the MRI--I have had several, with and without contrast. I found it to be not as bad as I expected. In my experience, the first few minutes are the worst/most uncomfortable, as far as feeling closed in. Once I relaxed myself through that, I was fine for the remainder (with no sedative). Having something to listen to certainly helps. It is noisy, and even with something pleasant to listen to, you will still hear the knocking and banging and vibrating. I worked on focusing on the music (I brought my own after the first time!) and on breath, now and then. Most likely you would do fine with no sedative (unless you have some reason to think it will be difficult for you), but it won't hurt to use one. Well, I don't think I told you anything new--but I just wanted to add words of support to you. Katherine

Nina Congratulations! That is a significant accomplishment and must be such a relief. Hope you have a relaxing and fun trip. Katherine

Ayelet Hello! I just wanted to add my welcome as well. I also developed POTS with pregnancy (although I had it prior to that, just undiagnosed and mild). I am 36. These days I don't have a lot of symptoms usually, but I have to avoid certain situations to prevent onset of symptoms. I also cannot handle intense heat well and also just try to avoid being outside too much during summer days. Fortunately we do have AC. It gets very humid here, and my life in summer would be more difficult without it. I am glad, and interested, to hear that there is good care for dysautonomia patients in Israel. Your English is excellent, btw! Katherine

Ernie Thanks for sharing your experience with your first clothing shopping trip in four years. I think you are a courageous person. I understand how you would feel emotionally numb after an experience like that. Like Gayle said, it put you in a situation where you had to admit openly to the outside world that you are, at least for now, disabled. Also, when you are home a lot, I think it is disorienting at first to go out into public spaces, especially. I know I felt that way--in fact I had this odd feeling like I was an imposter--when I finally started being able to go out places (besides the doctors' offices!). It is also so hard to feel pitied--which is perhaps how the fellow customer made you feel--even though probably she was genuinely apologetic and wanted to express that--not pity. I hope you are finally at a turning point where you can slowly start to become more active again. Katherine