Hello, New Here...

[erickamcc0523]

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

[flop]

Hi Ericka,

sounds like you might have found the right club. Sorry that you have reason to join our group but you are very welcome here. I wish you all the best with your cardiology referral and hope that you are on the path to diagnosis and treatment.

Flop

[erickamcc0523]

Hi Ericka,

sounds like you might have found the right club. Sorry that you have reason to join our group but you are very welcome here. I wish you all the best with your cardiology referral and hope that you are on the path to diagnosis and treatment.

Flop

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

[lloppyllama]

I hear you about the Catholicism orthostatic training!!! Haha, I too go to a Catholic church...I have come to terms with the fact that I will just have to sit down and not stand. It's bad especially since I am in the choir, but it all works out OK. Some people are rude and make snide remarks about it, but I just don't let that bother me, I am doing what I need to.

I hope you are able to get more answers at your appointment so that you can start more effective treatment!

Hopefully 2010 brings you answers and good health!!!

-Mary

[Brye]

Lutheran here! Similar scene...stand, sit, stand, sit! It's a POTS nightmare!!!

Welcome!

Brye

[Nikki]

Welcome!

I hope your appointment helps lead you in the right direction. I know how frustrating it can be to deal with.

I hope you have a great 2010 though. :-)

[Guest tearose]

Welcome and sorry you have this challenge. I hope you will soon be able to manage your POTS and feel better with your daily activities.

I have no question that the "Divine" would be fine with you sitting down. Pray about it...listen for the answer.

I believe that it is in the little things of our daily life we enter into Divine Communion. We don't need to say a special prayer, do a special bow or stand for long times. The Great One knows our soul and is already with us right where we are. Just live every moment in the Presence. It makes it all so simple and so much more attainable.

with love,

tearose

[brownsea]

hi, hope the docs can treat you and you start to feel better.

emma.

xxx

[Tammy]

He he, had to laugh as I read the dilema with attending church services. I'm Catholic also, and have been to Lutheran and Baptist church services as well, and can say that all services in a variety of faiths have challenges for us POTSies For my faith community, I have talked to our priest and he understands why I can't kneel or stand at times, etc. I think some people within my faith community might not understand, but figure I'm there to spend special time with Jesus, so it doesn't really matter what a few folks who aren't able to relate may think. But just like any sort of activity, be it shopping, going outside in too cold or warm of weather, church, etc., it really can be quite the challenge!

[tinkerbella]

Welcome Ericka,

This is the most wonderful forum of all~

I'd be lost without DINET. Having become home bound over the past year I have made many new friends and I have found much support here.

I think they should have bed pews for us. LOL!!! You can watch on the internet I do that sometimes St Ann's Mass and watch it on my laptop from anywhere I chose to.

I feel that God, gives us a lot of great options out there and we can do whatever is Best for us. Then it's what we do when we are out of church that really counts.

Blessings and a warm welcome,

Bellamia~

[erickamcc0523]

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!

[Chaos]

Welcome Erika. Glad you found the web site. I had the same reaction when I started reading about POTS. Prior to finding the info on dysautonomia, my husband and I kept referring to my illness as my "psycho-malingering disease". We had to laugh at it or I would have been crying in frustration ALL the time instead of just some of it.

Have to tell you I was SO happy on Christmas Eve. It was the first time I could stand up for most of the necessary parts of church and could even SING most of the songs. Haven't been able to do that in 5 months!!! This disease process certainly makes you appreciate things you used to take for granted.

Good luck getting a diagnosis. I'm in the process of doing that myself.

[Detrick7]

Welcome Erika. As someone recently diagnosed with NCS by my cardiologist (about 3 months ago) I wanted to share a few things with you that I hope you find helpful. I really hope your cardiologist is familiar with POTS, NCS, etc. if not don't be afraid to try another cardiologist. Some doctors are much more familiar with forms of dysautonomia than others. Your cardiologist will probably do a Echo test and an EKG to make sure nothing is structually wrong with your heart. Assuming this comes back normal, which very, very, very likely it will based on your age the discussion of POTS, NCS, etc will probably start.

I am 31, and similar symptoms as you, pretty much daily presyncope (especially in the morning), tired all the time, and stairs kill me. I was really worried that something was wrong with my heart, but to qoute my cardiologist "you have the healthiest looking heart I have seen in a long time". At this point, I still had no idea what was wrong with me and I had been to half a dozen doctors in the past year and a half. My cardiologist told me he knew exactly what was wrong with me, NCS. He ordered a tilt-table test, but told me no matter what the result of that he was very confident I had NCS. Tilt table test have both false negatives and false positives, and the results of it he just hoped would help him determine the best way to treat my NCS.

The point I am trying to make here is don't get to hung up on the results of a tilt table test (if you have one) and don't worry to much about your symptoms the day of your appointment. If you are fainting or almost fainting (I just almost faint), are tired all the time, are 23 years old and get very tired climbing some stairs this is not normal, and assuming your heart is structually fine it is most likely some form of dysautonomia. What you tell your cardiologist is most likely going to be more important than anything they "find" at the appointment, because most likely the tests (ECHO, EKG, etc. etc.) will come back normal. I did not faint during my tilt table test, I did almost faint 3 times and my heart rate and blood pressure went all over the place. As you know the tilt table test is basically standing still for 20 minutes. Just like you I was really hoping to faint during my tilt table test. I actually wish over the years I had actually fainted, it would have made me get it checked out much sooner.

When my doctor told me I had NCS, I had no idea what it was, and he gave me some literature to read and some websites. I had a similar reaction you did when reading about NCS, something I had struggled with for 15+ years in silence because I thought it was weird finally had a name and described EXACTLY what was going on with me. It was a very liberating moment.

Good luck with your doctor appointment, let's us know how it goes. In the mean time as you have probably read you should increase your fluid intake (water and/or gatorade type drinks) and possibly increase your salt intake. At the direction of my cardiologist I tried dranking a 100 oz of water/G2 a day along with a high salt diet. Unfortunately it did little to help my NCS symptoms and had to go on medication, along with drinking lots of water and the salt. If you would like to hear more about the different types of medicaitons and doses I would be happy to share.

Lance

[Broken_Shell]

Hi Ericka,

Welcome to the forum! I am sorry for your suffering, but I hope that those of us with dysautonomia will be able to help provide you with support and guidance.

Have you scheduled with the cardiologist yet? You may want to call his office and make sure that he is familiar with dysautonomia and POTS. Being in Tennessee, perhaps Vanderbuilt would be an option for you.

Please find strength and hope in the Bible verse at the end of all my posts!

~ Broken_Shell

[erickamcc0523]

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."

[Guest tearose]

Hang in there Ericka,

You have a great plan. Try the one doctor and if you need more information go to Vandy! Just keep trusting your inner wisdom. Focus on yourself right now and getting your diagnosis and then a treatment plan.

Family and Friends are an entire whole realm that you will have to deal with afterwards!!! Some will be so happy for you to have answers. Some will never understand...do not let anyone's comments get to the love and compassion in your heart and hurt you! Just meditate/pray for them!

best regards,

tearose

[jimells]

"Bed Pews" -- I love it!

Personally, I'd rather have a recliner. Or how about a recliner with wheels? Could it work for mopping floors?

[lauralulu]

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!

AGREED!!! Good luck with getting a diagnosis. xx

[tinkerbella]

My first year I couldn't even post... I kept peeking in and reading and crying. I thought someone had been looking in my windows. Told my doc that all I could do was peek a bit, then a year later I jummped in and boy I was glad I did.

couldn't figure out the darn control panel for a week and felt like a fool with my messy posts begging for help. I still can't figure out some functions, but I'm here.

thank you Dinet,

bellamia~