Gena

I posted about a week ago regarding some problems with arrythmias and my heart stopping for several seconds. Well, every other night or so since then I've woken up in the middle of the night with a brief spell of tachycardia (tonight I has another arrythmia spell too, with what felt like multiple heart beats at the same time.) Tonight I had the tachy after having a bad dream but then, my heart was settling down after a couple of minutes, and I coughed and then that's when the arrythmia kicked in and my HR shot through the roof again. I've had nearly 3 great months of only mild symptoms and now I'm having a bit of a relapse. ugh! (and nothing has changed in my daily regimen.) When I first developed POTS symptoms, my BP was on the floor, so when I had tachy in the middle of the night I could either attribute it to a nightmare or to low BP. But my BP has stabilized a lot of the last couple of months. When I go to bed now it's usually in the nineties over fifties.... which is great for me, b/c it used to run much lower. This past week, when I take my BP in the middle of the night, it's right after or during the tachy episode and by then it's shot up to at least 110/70, so I'm not sure if it's falling too low prior to the episode or what is actually triggering it. (I'm lying in my bed when it happens. (I'm not triggering it by trying to get out of bed or anything.) I have mild MVP and I know hypovalemia can make that worse ,but I am drinking plenty of fluids. I'm getting to my question now... Does anyone have tachy and/or arrythmias even when their BP and fluid level seem to be pretty good? I guess I'm just looking for some peace of mind here....my anxiety levels have been running high this week b/c of all this! Not to mentioned I'm really bummed about this setback!

I went to Mayo in Jacksonville in September. I took a list of all my symptoms and questions to ask the doctors. I also took a copy of all my previous medical tests I had done this year and put them in a binder with tabs. I categorized the tests, such as Heart, MRIs, Blood work, etc. and put each category in date order so everything was very easy to find. I also had researched and wrote down all of the tests that I wanted done....was hoping the test results might help in coming up with treatment plan for my POTS symptoms. The neurologist listened to everything very intently and took a lot of notes...he spent almost an hour with me. He then ordered tests that I wanted in addition to a lot of others. I had urine tests, blood tests, autonomic tests such as TTT, blowing in a tube, a sweat response test (that's not the actual name of the test, but I can't recall the scientific name). You normally don't get to have all the tests done the same day, as it all has to be scheduled with various depts., so that's why they tell you to plan on staying a minimum of a few days. If you go to the dept. you're supposed to have a test with a few hours earlier or even a day or two earlier, sometimes they can work you in if you want to hang out "on standby" since they often have people who cancel or don't show up. Also, I couldn't stay and wait for my follow up appt. to see the doc to review my test results, so he agreed to that I could call him the following week and he'd review the results over the phone. He did and that worked out fine. Overall I thought they had a great system and I never had to wait too long at any dept. for tests. Bring a book to read or knitting or whatever, just in case. Almost all of my test results came out normal, which was great, but also frustrating because the neuro summarized in his report that maybe I didn't have POTs, and perhaps I just had hypovolemia. However, the cardiologist I saw said that based on my symptoms he felt I definitely have POTS. He said you can't go by test results alone. So anyway, I hope this helps. Overall, I was glad that I went.

I used to be skeptical of leaky gut syndrome too. But I know now, it is a true condition caused by tiny tears in the intestine which allow larger molecules to escape into the bloodstream that should not. Toxins and food substances are able to travel around instead of staying contained in the intestinal tract. This increases the chances for inflammatory, automimmune and chronic disease process.....and greatly increases food allergies, chemical sensitivities, etc. It is definitely a good idea to cleanse the body of toxins, however there are many products and methods to do this, some are good and others don't work. I'm not sure what the holistic doc is giving her. When I was first dx'd w/ celiac disease, I had a food allergy test (via blood) and discovered my body was allergic to about 42 different foods. I was appalled. I did a food allergy elimination diet in which I avoided these foods for three months. (it was next to impossible, but I did it). I also took IntestiNew (which has L-glutamine, n-acetyl-glucosomine and rice bran oil - all substances that help the gut repair itself) for a year. My swollen glands, digestive problems and achy joints eventually subsided. I recently retested for food allergies and was thankful to discover that my blood only reacted to a four or five foods, and the reactions were very mild. As far as adrenal insufficiency, she may want to get all of the proper tests done by a good endocrinologist to determine if this is true. I've read that AI is common among those with CFS and fibromyalgia and I've also read that licorice root extract is good for that.... Like the other posts said, there are good docs and bad ones. The best thing we can do is educate ourselves and do research...much like you're doing now. You're a good friend to her!

Hi Merrill, The Xanax makes me feel calmer but not overly spaced out or anything. Like I said I usually only take a 1/2 pill of the smallest dosage (.25 mg) and it usually works within about 30 minutes. When I first tried it the first few times it did make me feel a little spacy and sleepy. But now, I normally just feel more relaxed and less anxious. I hardly ever take it during the day, but it does help me sleep at night. However, I did still have a an episode of pretty bad tachycardia just a few nights ago, even after taking a 1/2 of a Xanax pill. So it's not always a sure fire remedy, but most of the time it does help. I have to caution you that it can be an addictive pill for some people. My doctor says it's "like Jack Daniels in a pill"... I prefer think of it as a nice glass of Cabernet...as you get kind of the same effect! With that in mind, I only use it sparingly. I've never had an addictive personality, but I force myslef to use other relaxation methods first and using the Xanax only when I really need it (it's the only med I take and I've managed to make 20 pills last for 3 months!) One of my docs who specializes in MVP and dysautonomia also gave me samples of Klonopin in a wafer form that melts in your mouth. She said they are very fast acting and help calm you down if you're having an episode. I have not tried these though. Always hesitant to take new meds. But I believe I've read on this forum that the Klonopin works pretty well too.

A recent question about a recommendation for Mayo doctors prompted me to get off my butt and finally make this post! I went to Mayo in Jacksonville back in Sept. and saw a cardiologist named Dr. Fred Kusumoto (I believe I mentioned him briefly in another post a while back.) However, I just wanted to tell everyone on this forum that I think he is very good and quite knowledgable about POTS. He's new at Mayo and came from somewhere in the southwest. He's treated many POTs patients before coming to Mayo. He was very friendly, a great listener and seemed to really sympathize with and understand all of the crazy symptoms we have. He suggested some helpful tips and offered insight as well. And despite his name, he speaks perfect English! The last thing he said to me was " I take pride in being accessible to my patients." He gave me his card with the direct phone number to his secretary at Mayo. He said call if you ever need anything or have any questions. The last few days I've been having a lot of chest pain and arrythmias, so today I decided, what the heck, I'd try giving him a call to see if I could discuss it over the phone with him. I called and his secretary was out, but I got some woman who took my name and phone# and said she'd give him the message...I thought, yeah right...either he won't get the message, or he'll have a nurse call me back, or I'll have to call back 29 times before he'll ever respond. Within one hour I got a return phone call from Dr. Kusumoto himself! He had my records in front of him and completely remembered my visit with him. I reviewed my symptoms and shared my anxiety. He was great! He didn't seem overly concerned since I have no blockages or heart disease of any kind, but said if I continued to have frequent arrythmias that he would work me in his schedule as soon as possible for more testing or he could tell me what tests to have my local cardiologist do here. He was very sympathetic and I felt much better after talking with him. I highly recommend him to anyone going to Mayo in Jacksonville!!

HI Radha, I think the counselors are right about your fears and emotions being normal. You've had to make a lot of adjustments....going from healthy and independent to sick and dependent upon everyone. We want to regain our health, yet there's always the what if question of how long will it last. I've only had POTS 4-5 months and have already developed physical and emotionally dependent "crutches" that are hard to let go of sometimes even though I'm feeling much better now. I remember when I was very sick over the summer and having severe tachycardia at night, my husband got sent away on a business trip for a few days. I was terrified to sleep by myself. I had gotten so used to him comforting me and riding out these attacks with me, that I couldn't imagine not having that support. But once I got through the first night of talking myself through the tachy and dizziness, etc., I was a little more confident for the next night. Each night I became increasingly more self-reliant. I dont' know your physical status right now, but maybe you could try to start doing small things for yourself. Just doing very simple things can build up your confidence and independence. It's a great feeling to know you can call on someone to help if you need them, but it's an even better feeling to know you can achieve and accomplish some tasks on your own. It is a scary transition, no doubt. But maybe if you start thinking of yourself as being healthy and hold this positive image in your mind of regaining your independence. Didn't some wise person propose that the longest journey begins with a single step...right? I'll keep you in my prayers that you find strength, courage and peace.

HI Angela, and welcome to the forum. POTS is definitely frustrating, scary and physically and emotionally draining! (and that's putting it mildly) It often takes a while before finding the right combination of treatment methods to get functioning again. I'm assuming you're already doing the basics such as extra fluids and salts, compression hose, perhaps licorice root? Don't give up hope though. There are many who have been able to get back to their love of sports, dance, running, etc., --with a few modifications of knowing their new limits! I was never an "athlete" per se, but I enjoyed working out 5 x week, hiking, raquetball, swimming, etc. I am now able to do those things again, but my tolerance level isn't what it used to be. We learn to adjust and be a little more forgiving of ourselves. Okay, back to your question about Mayo...I went to Mayo in Jacksonville in Sept. of this year (2004) and saw a cardiologist by the name of Dr. Fred Kusumoto. I am going to make a separate post about him, b/c I think he was really wonderful and others might want to know as well (see that post for more details on him). I also saw Dr. Cheshire (a neurologist at Mayo) and he ordered a great set of tests - a complete work up - but didn't seem as knowledgable about the nuances of POTs as Dr. Kusumoto, or maybe my case was just too baffling! I hope you find the treatment options that work best for you soon. This forum is a great resource too.

Hi Timbo, Glad to hear you're doing relatively okay! I have to ask, what are some of your tips/advice for calming your anxiety? I go through phases where yoga, gardening, meditation, autosuggestion or visualization work great for me... but then there are times when it seems nothing works and that's when I resort to a 1/2 of a .25 mg xanax! Tell me your secrets, please! In regards to kidney pain, a couple of months ago when I went to Mayo, tests showed the amount of protein in my urine was slightly elevated. I've had some pains in my left kidney on and off for the last couple of months. I started taking "Kidney Activator" by Nature's Sunshine products and I don't have the pain anymore. I still plan to see a urologist to get some further tests done and have my protein levels retested, just to make sure it's nothing serious. Hope you have a wonderful Thanksgiving.

Opus and JLB... I actually work part-time for an herb shop which carries all of nature's sunshine products. And yes you can order their products on the internet at naturessunshine And yes, you will often find me on the board in the wee hours of the morning. I am in a very erratic sleep pattern right now! Opus, do you take just the single B6 supplement or do you use a B complex? Also, my B12 levels are always fine when tested, but I've never had any other B vitamins tested. Should I just ask my doctor to test for other B vitamins - is it a standard blood test, like B12? Timbo...thanks for confirming what I suspected was true about the deep breathing. I do use deep breathing techniques like JLB said as a preventative measure, but trying to do them when I've having tachycardia just doesn't work for me. I'm glad to know that I'm not the only one with these types of complications. I guess since I have mild MVP, it makes things even worse. Nonetheless, I will make an appt. with the cardiologist just to be on the safe side. Thanks!

Hi WSC, From what I've read and what I've been told by doctors, POTS symptoms can definitely get better. I came down with this in June/July of this summer and have already improved remarkably. (I'm going through a little flare up the past few days due to stress at work though). But overall, I can function fairly normally without any meds...I still work and exercise. My sleep patterns are erratic, and my exercise tolerance isn't what it used to be, and I still have anxiety about situations that I wouldn't normally have, but I am grateful for the recovery I've made so far, but I can't predict the future. I just hope for the best! POTS works similarly in all of us in many ways but also very different. I think of POTs as a snowflake == in that it's made of snow, but no two are alike, so everyone has their own unique version of this syndrome. Oh, goody! Which makes it harder to determine exact causes and best methods of treatment. I completely understand about wanting definite answers as to why, how, when, etc. I pray that we'll get some new insight and research into POTs soon. But in the mean time I will continue to do my own research and come running to this forum when I need support! It does get exhausting in so many ways and it's frustrating when our families don't understand. My husband says he understands, but I don't think anyone can really understand withouth experiencing what we go through on a daily basis.

I just wanted to reiterate that I think Nicole has wonderful parents and is lucky to have a mom who tries to understand all of the nuances of POTS and what she is feeling from one moment to the next. Please tell Nicole I am praying for her with all of my heart and soul. Remind her to try to think positive thoughts and to send her body affirmations of healing as often as she can. I know when we're in the PITS of POTS, it's easy to dwell on how awful we feel. I find that if I choose a positive message or two and say it over and over (sometimes I write them down or say them out loud) that my state of mind really improves and eventually my body responds to those healing thoughts if I do this frequently through out the day. It's like a suggestion to the body, for instance... "My heart and blood pressure are stabilized and normal. I feel healthy and strong." or "God's perfect and divine health is flowing in me and through my body. I am strong, healthy and whole." I find that repeating messages to my body gives me something to focus on instead of thinking about how crappy I feel. I'm a firm believer that our bodies do respond to our thoughts. (This is often easier said than done, so sometimes I re-read the book called the Dynamic Laws of Healing to inspire me when I'm feeling down.) I know it must be difficult for Nicole to keep her spirits up right now, so I will definitely send some postivie thoughts and prayers her way.

Thanks JLB for the post. On two occasions my heart has gotten out of rhythm when it was racing so fast in the middle of the night, so I tried to do some abdominal breathing and then exhale somewhat deeply through the mouth (or through the nose.) On both occurances, the arrythmia came when exhaling. So now I'm afraid to try anything but good old normal breathing when my heart starts racing. I woke up a few minutes ago with heart racing from a nightmare, but managed to get it to calm down without any noticable arrythmias within about 5 minutes. So here I sit, unable to go back to sleep, perusing the electronic universe!

I forgot to add about the skipped heart beats. I dont' really know if we can bring them on at will, but there have been three times when I've been really stressed and my heart is having forceful heart beats and I think oh, my gosh what if it gets out of rhythm again, and suddenly, boom, it skips and gets out of whack for a while. I dont' think we understand just how powerful our thoughts can be!....so I try to channel some good, healing, happy thoughts through my body whenever I can, to try and negate all of the worries and stressful thoughts!

Your heart rate being in the 60s is okay as long as you feel okay at that rate. I know it's easy to stress about all of your symptoms. We worry about whether we're too high, or too low, or oh my God, is this a new symtpom that I should be concerened about. That's why I love this forum. Otherwise, I'd drive my husband nuts with all my worries! My heart rate is normally in the low 50s. Normal heart rate can range from 50 -100, but it depends on what is considered normal for you. My heart rate even drops in the thirties at night when I'm sleeping sometimes, so when I have tachycardia, my HR might only go up to the 85-95 range, but it feels like I'm having a heart attack. Some people can walk around and feel okay in that range, but not me. I asked the cardiologist at Mayo clinic in Jacksonville if he was concerned about how low my HR got at night, and he said he was not. Said I had good vascular or vagal conditioning?? or something like that I can't remember. But like I said if you feel okay and your BP isn't dropping too much, then 60s HR is great. One interesting thing the cardio said was that he used to be a consultant for the San Francisco 49ers football team. There was a guy on the team that had a HR that dropped as low as 8 (yes, eight!) while he was sleeping, but it had no adverse affects on him. The doc said he was extremely fit and had no heart problems at all. Amazing how individual bodies work efficiently at different levels. Hope this helps.

In answer to some of your questions, I am not on any beta blockers or other prescription meds. ( My doctors all have said they are reluctant to try BBs b/c my blood pressure gets so low. I tried a calcium ch. blocker a few months ago, but it made me so weak I could hardly get out of bed.) I have been on my usual multi-vitamins and ashwaghanda herb (helps with low blood pressure) for many months now and have not recently changed anything that I take. I have been very stressed the last week though. I've always noticed that whenever I've had a skipped beat espisode before and then weird rhythms afterward that breathing exercises usually seem to make it worse and more erratic, most of the time. However, I've never had a skipped beat episode that lasted for as long as this one did. I could not feel any heart beat at all and it felt like the blood was draining from my head. I will definitely see my cardio about this, however it takes a minimum of a month to get into see a cardiologist around here. It was a very frightening experience to say the least. But I have faith that I'll be okay! I'm feeling okay today, just exceptionally tired due to lack of sleep the past couple of nights.

I agree with everyones' posts about getting this symptom checked out as soon as possible. I don't have the cramping or muscle pain, but I have had the shaking/tremors several times before. I do not pass out (have come close), but when my BP drops really low and my heart races in funky rhythms my body often shakes uncontrollably all over and my teeth even chatter, like I'm freezing to death or something, but I'm not even cold. My husband has witnessed this too. I haven't had a tremor/shaking spell in several months though, as my BP has been fairly stabilized. I'll keep you in my prayers. Keep us posted.

Hi everyone. I'm sitting here in the wee hours of the morning and trying not to be too scared about what just happened. I woke up, went to the bathroom, sat back down in bed, propped up with a pillow and was feeling a bit anxious and having some forceful heartbeats, so I started doing some breathing exercises, in through the nose and out through the nose to try and relax. Well, the breathing seemed to be making me feel worse, but I thought, "just keep doing it and you'll feel better"...well I was so WRONG!! The next thing I know those forceful heartbeats stopped, and my heart completely quit beating, i got a shooting pain where my chest meets the arm pit area and felt really dizzy and detached. This lasted for what seemed an eternity, but maybe about 10 seconds, with NO HEARTBEAT at all. I was completely freaked out. And then suddenly my heart starts beating really fast in a very weird rhythm, like having heart beats on top of hearts beats, I guess it would be called PVCs, but not sure. and then within a few seconds got back to a normal pace, but still kind of forceful. Has anything like this happened to anyone, where they heart just stops for several seconds? All of my cardio tests are completely normal except for a mild mitral valve prolapse. Should I go back to the cardiologist or just chalk it up as POTS/MVP? I'm not sure what my BP was before it did this, but I checked it right after everything calmed down somewhat and it was normal 116/72, pulse 70. In the past whenever I've done breathing exercises because my heart is forceful, it tends to make me feel worse (although, it's never completely stopped my heart until tonight). Has anyone had any similar experiences? P.S. I've been doing soooo well for the last several months, with only very mild symptoms and my blood pressure has been fairly stabilized (and then boom! this hits me and now I'm scared to go back to sleep.

I concur with all of Katherine's suggestions and comments. Also, perhaps you can delegate some of the wedding responsibilities to a close family member or friend that understands your situation and condition. It's okay to let them know the stress is making your POTS worse and that any help they can offer would be greatly appreciated. And the best thing to remember is, "Don't sweat the small stuff!" (I know it's easier said than done, but sometimes when we look back on the things we worried about, it's amazing to see how minor they were in the scheme of things.) Congratulations on your wedding. Hope you have a stress free honeymoon!

Anthony, Welcome to the forum. I am interested to see how your holter monitor and TTT results come back. I had to go out of state (I live in FL) to a specialist in Birmingham, AL for a TTT. My TTT came back fairly normal, but my blood pressure and heart rate were high for me that day and stayed that way the whole time I was at the docs. (They usually run low and can jump pretty dramatically if I'm anxious or stressed. Going to a doctor or hospital always does that to me). I also went to Mayo clinic and had every test done in the world - my BP and heart rate were elevated the whole time there too. My symptoms hit me out of the blue just a few months ago. Even though my TTT was fairly normal, the doc in Birmingham still dx'd me with POTs and mitral valve prolapse(slight) based on all of my symptoms. My BP is almost always quite low, I get tachycardia after eating big meals or sugar or have any type of major stress. I also have nocturnal tachycardia that can occur when I stand up and to go to the bathroom after sleeping for a few ours or sometimes after a nightmare. I do get mini panic attacks from time to time. My ears feel like they are stuffed sometimes, my temp gets out of whack (from one extreme to another) and I get dizzy sometimes. One thing to note, many POTS patients don't fall into a standard definition of symptoms, so it's good to rule everything else out first. My symptoms were absolutely horrible at first, and I was not able to exercise b/c my heart would beat so fast. I was terrified of not getting my life back. Within a few short months I am now back to working out almost daily, and feeling much better. My heart rate still gets elevated more quickly than it used to when I exercise or do heavy lifting. I just learn to back off a little at let it calm down then resume at a slower pace. I still have many symptoms, but they are manageable. If you do have POTS, a book that is quite comforting and informative is The Mitral Valve Prolapse Syndrome/Dysautonomia Survival Guide Even if you don't have MVP, this book is sooo helpful for anyone with POTS or other type of dysautonomia. Also, I'm sure you've already learned that this forum is an awesome place to come for support and information. Good luck with your tests and keep us posted.

Hi there. I'm so glad to hear you're feeling better. It does make a world of difference when you feel like a productive member of society! I am thankful for those days. It makes you look at things with a new perspective. Good luck and keep us posted.

Beverly, I also have cysts and fibroids, and used to have crazy, irregular periods. I now use natural progesterone cream (you can buy at a health food/supplement store). The creams with real, natural progesterone (not just wild yam) have been successful intreating women from PMS to menopause. It really works to balance the hormones naturally. Synthetic hormones can be very bad for the body and have all kinds of consequences, not to mention increased risks of certain cancers. My gynecologist always said that it's important that you have a period at least 4 times per year to lessen the risk of uterine cancer and endometriosis. It's important that the lining be shed. Otherwise it builds up and that's not good. I know Nicole feels miserable having so many periods but maybe if you could balance her hormones, the periods wouldn't have such a bad effect. There are also many herbs that balance hormones such as dong quai, black cohosh, false unicorn, blessed thistle. One final note, I just want to say that I think you are a wonderful, caring mother and Nicole is lucky to have someone look out so much for her best interests. I'm sure that caring for her isn't an easy task, but it's obvious that you do it with so much love and concern. I applaude all of the research and questions that you ask. I hope you find a solution to ease her discomfort soon

Mary, Thanks for posting this poll. I've been wanting to know this myself. I lost some weight when my POTS symptoms intially struck me this past summer. I was already underweight. Now it's a struggle to gain even a pound! Iknow some people have the opposite problem though. It's really strange how it can affect us so differently. My doc in Birminham said that most people she sees with dysautonomia are underweight though.

Hi Katherine, Yes, there's a simple blood test you can request your doctor to order. However, in order for it to be most reliable you must have been ingesting gluten regularly, i believe for at least 8 weeks prior to the test. So if you've been gluten free, the test may come back negative for gliadin antibodies. If the test is positive many doctors like to scope the small intestine and take a small biospsy to confirm the damage to the lining. This step is just a confirmation of the blood test. Hope this helps. Gena

Stacey I can't get this link to work! You may want to double check it?

You crack me up Tearose!