erickamcc0523

I can really relate with you, Becky. I was diagnosed offically only 3 days ago, but I've already noticed that I have been having some anger and sadness at the fact that I'm official. Don't get me wrong, I am very glad and greatful that I'm past the point of doctors thinking that I'm having a "psychosomtic illness" (aka, "You're crazy and leave me alone, lady!), and to the point of getting treatment... But I suppose that being diagnosed with an illness that I've though that I've had for awhile and actually being diagnosed is like anticipating grieving for a loved one who is close to death and actually greiving them after they're gone.... I suppose for me, that explains my reaction that I've been having these past few days. I am glad that you have a therapist with whom you can talk about this with. I am very blessed that I have two good priests who I can talk this over with.... one is my regular confessor, and the other is my spiritual director. I have been given some good advise on how I can use even my most incapicitating and suffering-filled days as an offering for God, and though it doesn't really help diminish the symptoms, at least I can do something else than just react to them. Plus, they have been a source of comfort and I know that they are praying for me, and if I were to ask, they would also pray for everyone who suffers from POTS and other dysautonomia illnesses. Anyways, it seems to me that perhaps you might be grieving a bit from your official diagnosis, too, along with me. Here are prayers that we both make it through the process quickly and painlessly as possible.

Icthus, I have been doing this hold for a really long time when I get extremely cold (purple and blue legs, way past even shivering, can barely function, checking my temp shows that I'm somewhat hypothermic....). It works pretty well for me, though I'll flex my calves and other muscles in my legs while I'm doing it. It seems to get the blood flowing and the warmth back in me a bit faster. I am not sure where I picked this up from, except I just had one of those intuition moments (like the one that hit me when I first read a description of POTS). Also, for me, when I have one of the popcycle (as I call them) moments, usually the next day, I'm extra tachy and presyncoptic, and it's almost impossible for me to warm up.

The treatment, so far, hasn't helped so much, though I know I need to give it at least a couple more weeks before I call it failed. I hope that after a little while, it will start helping. I've been put on 25mg of metoprolol succinate XR, and though my pulse isn't racing as much (it's down about 7-10 bpm) when I stand, I feel even more presyncoptic. My ears also ring like crazy more often when I stand. I am unsure if it's just not helping the POTS, or if it's side-effects. Hopefully soon enough I'll know.

Oh yes, that happens to me most days, especially, like with you, when it's so cold outside.... Excessive heat makes it worse. Sometimes, I barely make it inside, and have to sit in my car for several minutes. I also can relate to the wanting to be normal, and wishing that just standing up didn't completely exhaust me. I have only missed going to church a few times in the past 6 or so months... looking back, I can see that I was having a very POTSy day, but at the time, I just thought that I was being very lazy. Either way, driving to (hour and a half round trip), going through Mass, and going back home is about the only thing that I can do on Sundays. Sometimes, I can't even do that. I have been working very hard on not being jealous of everyone who is able to participate fully (kneel, sit, and stand when prescribed), but there are days that it's very tough. I, too, wish that I could just go do errands, or even clean house (which I used to hate doing both)... It's funny that I miss doing what I used to hate to do, but I would give anything right now if I could without having to sleep the next day.

In TN, you pay $21 for the first permanant one (it lasts for 2 years), and then after that, it's $3 every time it's renewed. I am going to my GP (she should have received my records from my cardiologist by now) tomorrow to have that part of the paperwork filled out, and then to the county clerk's office. School starts back this Thursday (though I have to Thursday classes), and I hope to have one by the time I'm back in school. I have a full load, and I'd like to be able to not have to drop classes.

After much thinking and deliberation (and everyone's input on this thread... thank you! ) I have decided that I will go ahead and apply for the placard. I know that I will need it mostly for when school starts back, because like I said, it's over 100 yards walking at times, especially if I get there early for my class (usually the second one of the day, and the people in the first class aren't out yet)... sometimes it's difficult for me to go more than 100 feet, and the state law in TN is if the person is unable to walk 200 feet without having to rest or without assistance, so I definately fit under that criteria. Apparently it's pretty straightforward: just print off the application, fill out the first half of it, have my MD fill out the second half, and then turn it into the county clerk, who forwards it to the TN Dept. of Safety. I am unsure when I will get the placard after that, but it is the Dept. of Safety who issues it. I am going to apply for the permanent one, because though my cardiologist stated that though I may "grow out" of POTS, it wouldn't be until I at least hit menopause, and that I would never really fully have relief from symptoms... just that they probably won't be as severe when I'm older.

The common side effects of Metoprolol Succinate: Constipation; diarrhea; dizziness; dry mouth/eyes; gas; headache; heartburn; lightheadedness; mild drowsiness; muscle aches; nausea; stomach pain; trouble sleeping; unusual tiredness or weakness; vomiting The severe side effects: Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); blue or unusually cold hands or feet; chest pain; fainting; hallucinations; mood or mental changes (eg, confusion, depression); pounding in the chest; severe dizziness or lightheadedness; shortness of breath; slow or irregular heartbeat; swelling of the arms, hands, and feet; vision changes; wheezing; yellowing of the skin or eyes Is it just me, or does anyone else find it funny, and somewhat ironic, that the side effects of the med I have been prescribed to treat my POTS are pretty much the symptoms of POTS (minus 2 or so of the severe side effects). I'm here trying to not laugh too hard, as I've been having chest pain today (and laughing makes it worse)... Kind of absurd, too, I would say. I guess that I've been so miserable the past few days, I have to find something to laugh at.

I called my good friend after my appointment, and he said, "Congratulations... I think?"... to which I responded that it was indeed a time for congratulation... Again, it is worth quite a few smiles... and if I had the energy, I would be doing a happy dance.

When I feel O2 deprived (and I do quite a bit), I can't take in a full breath... Sometimes it helps to hold a pillow or something soft to my chest, and squeeze it (my chest, sort of like I'm hugging myself), and breathe out as much as I can. Sometimes, I'll sit down at a table, and sort of press my forearms against the edge for a little extra leverage... It's surprising how much I can exhale!! The next few breaths will calm the deprivation symptoms quite a bit, though there have been times that I've had to repeat it after a few minutes. Sometimes (especially when I have a cold or bronchitis), I'll cough some, but only a few times. I'm not sure where I picked this technique up, but I'm glad that I did, because sometimes it's the only thing that helps.

Lauralulu, I'll be praying for a similar outcome with your cardiology appointment, too. Erik, yes, it is kind of a mixed blessing, but I look at it like this... I would still be having symptoms whether I'm diagnosed or not. At least now, there are treatments that can help with the symptoms, and help me be able to be somewhat more active. I might even wake up before 9:30 some time soon (well, I did wake up really early this morning, but it's kind of hard to sleep with really bad back pain).

I have been wavering back and forth about whether to apply for one. Most days, I don't really have that much use for one (I like to frequent local businesses, so less parking spots.... closer to the door), but the days that I can barely walk to the end of the driveway, I really, really wish I had one. Especially for my college, since usually the time my classes start, the closest parking spot is at least a 100 yards away. I imagine that if I got one, I would get the placard that I would hang from my rear view mirror, so I could take it down if I was having a decent day, but easily put it up if I was having trouble. Anways, would I fit the critera (especially on bad days) to be eligable for a handicapped tag.. Should I got ahead and see about getting one?

First of all, Dr. Baerman is awesome! He actually spent the time to listen to my history and list of complaints... then he spent almost 10 minutes just checking my pulse and BP, both sitting and standing (and back and forth a few times). Though he isn't overly friendly, he is very meticulous, I can tell that he really cared, and wanted to do everything to help me start feeling better. He also isn't going to order a ttt, since as he said, that's used for diagnosis, and he has already diagnosed me. After he went over my vitals and history, he wrote POTS down on the workup sheet... I almost started laughing with relief and joy, because I know how much of a battle some of you have had in getting diagnosed... Plus, I am relieved that this is official... this is the beginning of the end of the darkness! Though I'm sure in a few days I won't be so thrilled being diagnosed with a potentially very debilitating disease, I am glad that I know.. Knowing is half of the battle. I was sent to have an echocardiogram, because my GP heard a heart murmer in the past (he listened carefully, and said that he didn't hear one), and I was told that my heart, at least structurally, should be in a text book, because it looks so great. Again, I am glad (for the most part.. ) to now be officially a part of this autonomically dysfunctional family!!!!!!

Great news!!! I missed a return phone call earlier from Dr. Leppanan, who is listed as a local resource on Vanderbilt's Autonomic Disorder Clinic's website. He specializes in autonomic testing, and one of his collegues (a Neurologist) in the same practice is very familiar with POTS. I didn't get a chance to talk to him, but he left a voicemail saying that he told his collegue about me, and that he agreed to take me on as a new patient!!!! I will still be going to the cardiology appointment tomorrow, but I am very thrilled to know that I have another local option to exhaust before needing to travel to Vanderbilt. I am even more hopeful that I won't have to, as long periods of travel really tires me.

Thanks for the information... I have trouble taking my BP by myself (especially in the mornings... my hands don't like to work so well, and I have an old fashioned BP cuff... I can't put it on myself too well), but I have been checking my pulse rate every morning, and there have been a few times it has spiked to over 150 in the mornings. I have written down a list of all of the symptoms that I believe that are related to POTS. I will ask for a ddx, but currently, I am 99.9999% sure that my symptoms are caused by POTS. Quick question about a symptom, though... when I'm feeling presyncoptic, sometimes my mouth and throat (and sometimes lungs) will feel very tingly, and when it hits my lungs, it almost feels like they are paralyzed for a short moment. Could that be related to POTS? This is the second time that I have diagnosed myself... when I was 20, I had my gallbladder removed, but only after 5 years of horrible gallbladder attacks and a few GI docs telling me that I was having psychosomatic stomach pain and nausea. The whole time, I knew it was my gallbladder. At that time, I didn't know about a HIDA scan (until 2 weeks before my gallbladder was removed, when it finally confirmed that it wasn't working), but if I had, I would have insisted on that test.

I'm starting off by writing down a list of symptoms, but I was thinking about also printing off the symptoms of POTS here on dinet and highlighting all of them I have. I will also insist on having my pulse taken while I'm sitting (after doing so for at least 10 minutes), and then after I stand. I will also insist on a ttt, but other than that I have no idea how to talk to him about this, so I was wondering if anyone had advise on how to do so.

I know my symptoms go haywire when the temps dip even below 45-50 F... unfortunately, like most of Eastern US, we have had a pretty bad cold snap, with the highs not getting above freezing. I was fairly active (I went to practice organ at church, which is up the stairs in the choir loft) yesterday... I also had to take a restroom break, down stairs (two flights of steps after all was said and done)... plus, when I was finished, I discovered that I had left my cell phone in the choir loft, so again, more steps. I also stayed afterwards for Vespers, which is standing the whole time (about 15 minutes.. maybe a little more). Anyways, after all this was said and done, on my 45 minute drive home, I kept debating whether or not to pull over because I was having such chest pains, and my vision was pretty blurry. Today, I slept in until 10:30 am and I still feel like I've run a marathon because I'm so tired. I forgot to mention that this 100 year old church doesn't have the greatest heating system, so I was pretty cold for my two and a half hour practice. I know the combination of cold and exertion is causing my symptoms today. I also have severe neck and sholder pain, which in the past I have attributed to TMJ (I have bruxism, or teeth grinding, at night when I sleep), but even after using a night guard for several months, and orthodontics now, I still am plagued with some pain.. Right now, my left neck and sholder are extremely tense and really painful. Heat helps some, I suspect because it encourages blood flow to the area. There have been a few times that the pain goes all the way to the top of my head, and that along with a hypoxia headache, I am really in some pain. Hopefully spring will be here soon enough... I don't know how long of this I can take!

I am currently looking for a heart rate watch, but I'm not sure what a good brand or style to get so I can better moniter my pulse rates, especially after standing. I'm looking for something less than $50, but am willing to spend up to $100 for one. So, who here has a heart rate watch and what type could you recommend for me to purchase?

I hkave an appointment for a cardiologist on the 15th... I don't know yet if he is familiar with NCS, POTS and other dysautomia syndromes, but my GP (who set up the referal), after I mentioned POTS to her, mentioned beta blockers and a tilt-table test... She specifically mentioned this doctor, so I am hopeful that he does know about POTS et al. If not, I am very lucky have as a friend a fairly well connected psychologist who has a fairly good chance of being able to point me in the right direction of someone more knoweldgable. If not, I'll make the 4 hour drive to Vanderbilt (or rather, I'll probably make the 4 hour ride with a good friend). I have already been upping both my salt (which is really difficult for me, as I have never really added extra salt to my foods and I don't like to... oh well, c'est la vie!) and fluids (again, really hard because I'm not the biggest fan of drinking alot of fluids as it sets of some heartburn for me), and though I don't feel marvelous, the pulse seems to not jump around as much. Still, I checked my sitting versus standing rate earlier, and it jumped up by 30 bpm and my ears started ringing. What's been most difficult (besides being sick) for me these past few years is my mother.... or rather the fact that she has told me how lazy I am because I have some days were I literally cannot make it out of bed, and other days where I do little to nothing because I just don't have the energy. While I do hope very soon to say "Ha! I told you so!!!!", at the same time, I don't really care. Right now, I'm actually just too tired to care. It's bitterly cold today (it didn't get above 26 degrees farenheight), and because of staying freezing cold all day, I feel so drained. By the time I played organ at Mass this afternoon, my hands almost did not want to work, which is something that only happens in the mornings when I first wake up. Nevertheless, I said a few quick prayers to St. Cecilia and I managed not to mess up too badly. I have been trying very hard (and failing mostly) to not worry.... Not only does anxiety cause more symptoms, it's also fairly useless... To quote my own favorite (at least recently) Scripture passage, from St. Matthew Ch 6: "Look at the birds in the sky; they do not sow or reap, they gather nothing into barns, yet your heavenly Father feeds them. Are not you more important than they? Can any of you by worrying add a single moment to your life-span?....... So do not worry and say, 'What are we to eat?' or 'What are we to drink?' or 'What are we to wear?' All these things the pagans seek. Your heavenly Father knows that you need them all. But seek first the kingdom (of God) and his righteousness, and all these things will be given you besides. Do not worry about tomorrow; tomorrow will take care of itself."

Ear problems: feeling like there is a ton of water in them, ringing like crazy, having difficulty hearing. This only happens when I have a really, really bad pre-syncope episode... comes on a few minutes before and lasts a few minutes afterwards. Also, all of the time, they also pop really easily, like every time I swallow or flex some of the muscles in my throat used to swallow. Gastric symptoms: nausea, very rarely vomiting (like every other month, if that), extreme belching (sometimes I'll wake up in the middle of the night with such pain!!! After belching for about 10 minutes, I'm feeling somewhat better), feeling pre-syncope when belching, GERD, varying periods of diarhea and consipation (a few days consipated and then the next few I have horrible diarhea)... I also had my gallbladder removed about 3.5 years ago since it stopped working completely. Heart symptoms: my pulse can be around 80 (usually never lower than 75) resting, but when I stand up, it can shoot up to at least 120, though sometimes it's even higher than that. Also at times, I will feel like my heart is beating out of my chest. Sometimes when my pulse is really high, you can see my carotid pulsing in my neck (much to the horror of a really good friend... I wish I didn't scare him with that). Once a month, I will get some minor chest pains, and when that happens, I become very pre-syncoptic and get tunnel vision. Eye symptoms: When I get pre-syncoptic, my vision will completely blur out... I don't really get tunnel vision, since I become completely blind for a few moments. Before that happens, I will see white or metalic (sort of like mercury) spots. Mental status symptoms: I will go through periods where I can barely form a 2 word sentence, and will babble like a fool... also I have alot of the "tip of the tounge syndrome", and it almost is like my brain is not working at all. I also have pretty severe allergies (both to periennal things, like dust mites and mold, and seasonal, such as pollen), have been diagnosed with asthma (though I was 5 when I was diagnosed, way before the other symptoms started), have a history of bipolar disorder (though I haven't been on such meds since July of 2008, and have been functioning just fine, emotionally at least... actually better, since alot of mood stabilizers have orthostatic hypotension as a side effect), and am extremely hyperflexable (so much so, that I can move my arms from my back to the front and to the back again without letting go of my hands) with varying degrees of joint pain (it varies from day to day, but generally cold and humid and hot and humid makes it worse)...... Anyways, I just wanted to know if these could be symptoms, so I could be better educated for when I see my cardiologist in 13 days... These are the only ones I can think about for right now, but I'm sure the more I keep reading and putting together the dots, the more I will learn just how much I've been effected.

I have 4 tattoos... A Vulcan IDIC on my left shoulder blade, and icthus (a fish) on my right bicep, a tattoo of the word "serenity" on the side of my left foot (and for the S, I had it replaced with a treble clef), and the most painful one, on my right foot, I have a scroll with "Jesus the Messiah" written in Hebrew. Though I don't really regret them (actually, I don't regret them at all), at least two of them I wish that I had waited a bit more before I got them. I would like to get a couple more, but after the reaction of some folks at church to my tats (not to me, though), I will have to have a sign fall from the sky before I would get another one. I do want to get an Immaculate Heart an a Byzantine Icon of the Theotokos somewhere... but I'll hold off on that for a few years.

I had almost 5 years of gallbladder problems, too... Normal CT scans and ultrasounds. A few GI docs (I went to at least 5 of them) thought that my pain and nausea was "psycho-somatic" and told me as much. However, back in September of '06, I had my worst gallbladder attack ever. I ended up developing pancreatitis, I suppose from spending all night throwing up every 10 minutes (there was NOTHING, not even ODT Zofran that would stop it). I was given IV Zofran and fluids in the ER, and a few days later, I had a HIDA scan, which confirmed that my gallbladder wasn't working at all... Surgery a week later confirmed that my galllbladder was full of sludge (but no stones... aparently, sludge isn't visable on US or CT scans) and the surgeon said it looked like it hadn't been working for at least 3 years. Not all bad gallbladders have gallstones... and not all good gallbladder are free from stones, either, from what I've been reading and have heard from others. Sometimes I get esophageal spasms, too, though like some of the other posters, they haven't been as bad or frequent since my gallbladder has been removed. It feels like I'm hiccoughing and burping at the same time (or at least that's how I describe it). I would ask your GI to perform a HIDA scan. They inject you with a small amount of a radioactive tracer and then you lie under a scanner for about an hour. Here is a link from the Mayo Clinic describing the process a bit more in depth. I have noticed that changing my diet (basically bread and water with some lean protein and non-acidic vegetables and fruits) has helped tremendously, though I still have GI symptoms even when I am eating well.

Glad that I'm not alone with the presyncope Church dilema... I, too, am in the choir for Church, which is actually a good thing, since it's with a Latin Mass community... you think that Novus Ordo Mass is bad as far a changing positions alot, you should try a Latin Mass... it's double the movement, and comunnion is given while one is kneeling (though I have talked with my priest, and he told me if I was having a particularly bad day, I could receive the Eucharist standing). At least with the choir, we stand during alot of the time that the congregation is kneeling (except during the consecration). My choir director is pretty understanding, too, so I don't really get a second look when I'm sitting (except one of concern when I have my head almost to my lap). Also, we're in a choir loft in the back (unfortunatly that means stairs.... not only do I have POTS symptoms, I had knee surgery in November, too), so if I were to actually faint, at least everyone in the congregation wouldn't see it (though they would hear it in the 100+ year old church with very good acoustics). I hope the cardiologist can provide some answers to what's been plaguing me, though I'm 99.999999% sure of what I have. I know that he'll probably perform the tilt-table test among other things. Is it kind of wierd that I hope that I'm having a really bad symptom day for my appointment? I hope that I do, since if I'm having problems, then maybe the testing will be able to pin-point easier if I'm having more symptoms. I can't say how relieved (strangely enough) that I have found out about POTS and other related disorders, because now I know that I'm not going crazy!!!!!!! When I first found dinet.org, I was almost crying reading the page on POTS, because I felt as if I could have written it myself. Although I know that POTS isn't really easy or fun to deal with, it was more difficult to deal with not knowing and thinking that I'm going crazy! Anyways, I hope everyone has a very, very BLESSED New Years!

Thanks for the welcome! Happy 2010 to everyone!!!!!!! What's really bad is that I'm Catholic (I juridically (officially) am Roman Catholic, but I also attend an Eastern Catholic Divine Liturgy... the first which has alot of kneeling and standing... back and forth between the both, actually, and the second one which stands most of the time [a Divine Liturgy can last almost 1 hour and 20 minutes most of the times] except for the few times that profound bows, at least 90 degrees from the waist, are made).... and I've had most of my symptoms at Church... My priest has been fairly worried about me, since he knows about a few of my moments of almost passing out. I am hopeful that on the 15th (which is my appointment date) that I will be scheduled for a tilt-table test and that I will actually pass out (or at least come close... because if I do, then that pretty much confirms my diagnosis). Anyways... Happy 2010 to everyone, and I hope to speak more with everyone soon! Ericka

Hi, I am Ericka and am 23 years old... I have had symptoms of POTS (I think, only because I haven't been diagnosed yet) for a few years, though after a recent surgery, the symptoms have been much, much worse, to the point that I am exhausted all of the time, and doing something simple, like climbing the stairs, will cause my pulse to become very rapid, and I experience presyncope. I recently have been to my physician and she has referred me to a cardiologist. The more I read about POTS and other dysautonomia disorders, the more that I am convinced that they symptoms that have plagued me for so long are due to something like this. Anyways, I wanted to say hello... I don't have any more time to add information, but I wanted to wish everyon a Happy New Years!! Ericka