Newbie With Questions

[meandean]

Hi Everyone,

I'm new to this form, my name is Dean and my EP diagnosed me with POTS last month, but isn't treating me for it. This was after he did an abalation on me in June for SVT, for two days after the abalation I felt ok, but went down hill very fast from there.

At first I thought I was only dealing with SVT, but after POTS came up I started to research it and found this site and it has helped me to feel like I'm not CRAZY!

My story is that before POTS hit I was an athlete, training five days with weights and cardio, in January of this year I started to feel short of breath and my heart began to race and had severe fatigue. I knew this was not normal for someone in my physical condition, long story short went to the Cardio doc, after stress test, echo, etc. they said I had SVT and to see an EP. In Feb I saw the EP he wanted to do an abalation right away, I didn't want to because I've been through some serious surgerys, brain 1998 and cervical neck surgery in 2004.

I continued to train and try to beat what ever was trying to keep me down, but one day in early June I was doing cardio and could not manage to do 5min and was extremly out of breath and was having severe chest pain.

I was able to get in to see my EP quickly and again he said the abalation was my only answer, I agreed and went through with it, before surgery they gave me Reglan and I had a BAd reaction to it, I lost controll of my tongue and couldn't speak right. The docs got me stable and continued w/surgery.

After seeing all kinds of doctors and test after test, my EP comes up with POTS, can an EP even diagnose POTS?

I've got some questions for you guys, has any one had hoarseness with POTS, I've had it since June before the abaltion, I've been seen by an ENT, my Nero who is wonderful and everything they've tested me for comes back neg.

Besides being hoarse, I'm tired all the time, have no energy, exercise intolorent (which is really killing me!) I lived to weight train, I was a competitive female natural (no steroid use) bodybuilder.

I experience most of all of the symptoms that you all do. Any suggestions of any doctors in South Florida that treats pots?

I've gone on long enough, but any help in trying to deal with this would be appreciated!

Thank you!

Dean

[Guest dionna]

i too was working out everyday, running, and weight lifting--- and then all of a sudden i started fainting at the gym- which they banned me from- and on all my runs. it took half a year to diagnose me with NCS and a year and a half just about to diagnose me with POTS. since then i keep getting diagnosed with new things.

you aren't the only competion body builder to be having these problems either if that makes you feel any better. i know one that is in SC that had CFS (Chronic Fatigue Syndrome) during his early 20s but got rid of it (his was from having mono i believe), and another one, who has NCS and he still goes to the gym every day that he can for atleast an hour--- both have been natural as well. very picky about everything they do and take in.

some people get rid of POTS within the first couple of years having it. i hope that is the category you will be put in. but you will also see on this forum that many have had it much longer than that, and some their entire lives if it was inheritated.

i am not familar with florida at all but on the home page you will see a link that will take you to physicians that know of POTS and dysautonomia in your area. just look under florida's list.

http://www.potsplace.com/physicians.htm#United%20States ....just click on this link and it will take you directly to it.

i hope that you get to feeling better and that soon you will be able to get rid of that excercise intolerance. i do understand how hard that can be on someone. i have had over 2 years to accept it so it isn't as bad anymore but i still wish.

good luck to you and take care okay?

dionna

oh i meant to say welcome aboard. you have come to a great place to make friends on the net and learn a lot of good information. you will definately know you aren't alone so ask away at any question. chances are really high that atleast one of us will know exactly what you mean and may even have a solution for you.

[Dizzy Dame]

I was very athletic before getting sick (I rode horses 5 days a week, and surfed almost every morning...this was when I was still living in Hawaii). I know how difficult it is to give up the activities you love so much because of this illness. Hopefully your POTS will resolve on its own, for most people diagnosed with POTS, they improve within a few months.

I don't have problems with hoarseness...but maybe someone here will be able to help with that.

Good to meet you!

-Lauren

[Ernie]

Hi,

I was athletic before getting sick. Swimming 2 miles per day. My case is genetic but I crashed overnight from taking a medication.

Welcome aboard.

[MomtoGiuliana]

Welcome. Yes an EP can diagnose POTS. Many of us have been diagnosed by EPs and they tend to be at least aware of POTS, if not specialists in autonomic dysfunction. POTS does resolve for many people with appropriate treatments (medicine, diet and/or lifestyle changes). Don't give up exercise, unless your doctor has told you to--and since you are getting symptoms with exercise definitely talk to your doctor about that. But, exercise has been shown to help POTS patients in the long run. That said, many of us find that we are never able to reach the level of fitness we had prior to POTS.

Katherine

[Guest dionna]

http://en.wikipedia.org/wiki/Vagus_nerve

i was looking up the vagus nerve and i came across this article and i thought of you. you are the first person i had ever heard complain of hoarsness so i remembered that just in case i ever got it or if any others ever complained of it. when you are looking at the above article scroll down almost to the bottom under effects of vagus nerve lesions and it will say "The patient complains of hoarse voice, difficulty in swallowing and choking when drinking fluid." and i did take that quote directly using copy- edit- paste. the link also provides a lttle more information about the vagus nerve. if you are interested more in it you could just type the key words vagus nerve and google or whatever it and learn more and perhaps you and your doctor could come up with something to help you out if that is what could be wrong with you. maybe that could be treatable or managable. i'm not sure though. i am just starting to research it but i was excited so i wanted to immediately post in case it could help you or atleast help you get an answer.

dionna

[meandean]

http://en.wikipedia.org/wiki/Vagus_nerve

i was looking up the vagus nerve and i came across this article and i thought of you. you are the first person i had ever heard complain of hoarsness so i remembered that just in case i ever got it or if any others ever complained of it. when you are looking at the above article scroll down almost to the bottom under effects of vagus nerve lesions and it will say "The patient complains of hoarse voice, difficulty in swallowing and choking when drinking fluid." and i did take that quote directly using copy- edit- paste. the link also provides a lttle more information about the vagus nerve. if you are interested more in it you could just type the key words vagus nerve and google or whatever it and learn more and perhaps you and your doctor could come up with something to help you out if that is what could be wrong with you. maybe that could be treatable or managable. i'm not sure though. i am just starting to research it but i was excited so i wanted to immediately post in case it could help you or atleast help you get an answer.

dionna

Dionna,

Thank you so much for that helpful information and the welcome aboard note. My nerosergeon had a thought that it could be the vagus nerve, but never went any further with it, becaused he referred me to another EP at the U of Miami. I see the new EP on Wed. hoping he is somewhat familiar with POTS. Are you in the Marine Corp? I'm wearing my USMC t-shirt at the moment, my husband is a Marine.

With my voice I sound like one of the chipmonks most of the time and in the last few weeks have been experiencing tightness, like someone has a slight choke hold on me.

Thanks again for the article, I appreciate the time you took out to send it to me!

Dean

I was very athletic before getting sick (I rode horses 5 days a week, and surfed almost every morning...this was when I was still living in Hawaii). I know how difficult it is to give up the activities you love so much because of this illness. Hopefully your POTS will resolve on its own, for most people diagnosed with POTS, they improve within a few months.

I don't have problems with hoarseness...but maybe someone here will be able to help with that.

Good to meet you!

-Lauren

Good to meet you to, I hope my POTS does resolve on it's own as fast as it came upon me!

Dean

[wareagle]

Hi Dean..welcome aboard!!

Just wanted to make a suggestion regarding your vocal issue. See if your doctor will refer you to a Speech Language Pathologist...since you've been to an ENT and they found nothing structural that would explain your horseness I think a Speech Path. would be a good next step (yes, I am a SLP). There are many things that could be causing your horseness that therapy could help you with. We also work with swallowing disorders as well so if that is or becomes a problem it can be address too. If you want more info. on vocal disorders you can go to the American Speech and Hearing Association (ASHA) website.

Not saying that this isn't related to your other medical issues..it quite possibily could be..but at leaste this is another avenue you can look into regarding a diagnosis.

I hope you find some relief soon!

[Guest dionna]

marine wife- they have the saying that being a marine wife is the toughest job in the corps.

i guess that would be an opinion thing- i want to be a marine's wife.

--- i am wearing my green usmc issued sweat shirt and my usmc tattoo on my back. yes i am LCpl Price, USMC Ret. they retired me with Autonomic Dysfuntion, NCS, POTS, migraines, anemia, and some other stuff i can't remember right now. i was a 2311.

i thank the both of you for the service, dedication, and sacrifices you both make to the the corps and to our country.

Semper Fidelis,

LCpl Price, USMC Ret.

[willows]

Hello Dean and welcome .

I was reading your post with great interest , I get swallowing problems and can get a bit croaky at times but what I do get about every 18 months ( and have had for 20 years + ) is I loose my voice completely for about 6-8 weeks if I'm lucky , I also have difficulty drinking, eating and just swallowing in general in this time .

I used to think it was just something else I got like a throat bug, but this voice loss comes on very quickly ( about 24 hours) and I dont have a sore throat ,cough or cold before hand , very strange.

I do feel for you it must be hard to except that you no longer have the energy to train and he super fit , but take heart something else will come your way , have you thought about writing a book about sport ?

What about assisting in a school or college as a part time coach or writing small books about different sports in 'easy to understand language' for kids of the ages say of 5- 7 and 8 -9 there is not a lot of really good lightweight books for kids to easily understand the sport that they would like to play at this time, you know the sort of thing you can stick in your back pocket and take to the playing field with you , say on things like; volley ball, cricket, net ball, base ball, ..........blimey there's so many ! Its just a thought and something they may keep you feeling a bit better if you know there's something else you can turn your hand to .

Best wishes for now .

Willows.

[Guest Anne L]

Hi Everyone,

Besides being hoarse, I'm tired all the time,

Welcome Dean,

This is a really good place to be. Lots of people will identify with what is happpening to you. There are years and years of experience represented in this amazing group.

Regarding hoarseness without a sorethroat, a trip to an ENT diagnosed GERD. I was incredulous. I had never had heartburn. Inflamed vocal cords and surrounding tissues were the give-away.

Anne L

[meandean]

Thanks to everyone who has replied to my post, I don't feel so lost or alone anymore. Thanks for all the help and suggestions!

Any ideas on how to cope with being tired all the time? I slept for 36hrs this weekend and still felt like I could sleep my life away.

Does bending and then getting back up effect anyone? I'm having a really tough time with that, guess I need to learn to think before I act with this POTS thing!

Thanks again,

Dean

[bttrflyamby1981]

Hi there!

I don't have anything to add but did want to welcome you.

Best of luck to ya!

Amber

[jenwclark]

Does bending and then getting back up effect anyone? I'm having a really tough time with that, guess I need to learn to think before I act with this POTS thing!

Hi Dean, and welcome.

Bending over and standing up is awful for me. Doing laundry knocks me out for an hour or more because I have to bend over to get things in and out of the washer and dryer. I used to leave myself notes on the floor, but now I leave them on a table so I don't have to bend over and pick them up later. I don't actually pass out, but I get dizzy and my vision grays out, and I get headache and nausea that stay even if I lie down.

I'm glad you're feeling less alone. That's one thing we can all do for each other.

Spike