So sick of this!

[Guest thisblows]

Ohhh I am about to burst out of madness over here! One day I was playing soccer and doing everything a normal 20 year old does and the next I am awaken from my sleep with a heart rate of 180 BPM! When is this all going to end? Well I just thought I would let you guys know that I will be having another radio frequency ablation to my SN node done in a month. My EP swears to me that I don't have POTS so this is the right thing to do. Do I trust and believe my EP...yes and no. I always think the worst possible thing will happen even when all the signs point to the best possible outcome. I have been reading through all your posts and I just dont feel like I belong here. I dont understand how you guys feel cuz most of the stuff that happens to you dosent happen to me. I jump out of bed every morning and take a scalding hot shower..all with no problem and no meds! I can stand in one place all day long and never feel faint or funny. In fact the only time I have ever felt faint is when I get an attack where my heart beats 180 BPM...which only happened while upright once...the rest of the 8 or so times have been when I was laying down or in the middle of the night! I don't have any food intolerences or bowl problems...urinary frequency...numbness...tingling...balance problems...the only thing I have is a fast heart rate and it never slows down...never under 100 even in my sleep! I do feel a good amount of fatigue but if your heart was always beating at 100 BPM wouldn't you feel fatigued too. I can't really tolerate any meds...I would have to take so many beta blockers to get my heart rate in the 70s or 80s that they would drop my BP into shock levels. The only symptom I have of POTS is that I get a heart rate that sometimes goes over 30 BPM from laying to standing...but it ususally only goes that high for a few minutes and then goes back down to about a 20 BPM increase. I had a negative tilt test only showing a 20 BPM increase. My resting Heart rate was 140 and I went up to 160 when upright. I was upright for a whole hour! I never once felt dizzy or anything...just normal but I could feel my heart beating...but I can always feel the **** thing beating! I just cant wait to get this ablation out of the way so I can get on with my life. I have a soccer scholorship to my university and I need to get better so I can keep it. I need to take my LSATs so I can get into law school in a year. I have so many things I need to be doing and my stupid heart had to go out of whack on me for no dang reason in sight! Nobody in my family has had any heart problems...of fainting...low BP or anything like that. I havent had a virus...well I dont remember that last time I had a virus...and I've never had a major virus bad enought to do nerve damage! I know deep down in my heart I dont have POTS but I'm scared to death and cant seem to shake the feeling out of my head. But I'm like that though. I need to trust my doctors I guess...he even said that most POTS patients have fair skin and are of European descent (I've noticed that too from my nationality post) Ha I'm so far away from that it's not even funny. I'm olive complected...dark brown eyes and dark brown curly hair...and I'm only half white (german/english) and the other half black, hawaiian, and american indian. Gosh I'm sorry I just had to vent! I'm going to have the ablation done and if I mess myself up I just will mess myself up. When you are 90 years old you look back at your life and you that thing you will regret the most are risks not taken...I'm not gonna be one of those people! I hope that each and every one of you find happiness and have your symptoms just dissappear one day...even when I get better I will still pass the word of this condition so hopefully a cure will be found one day! Thanks for putting up with me!

[Sak]

Ohhh I am about to burst out of madness over here!  One day I was playing soccer and doing everything a normal 20 year old does and the next I am awaken from my sleep with a heart rate of 180 BPM!  When is this all going to end?  Well I just thought I would let you guys know that I will be having another radio frequency ablation to my SN node done in a month.  My EP swears to me that I don't have POTS so this is the right thing to do.  Do I trust and believe my EP...yes and no.  I always think the worst possible thing will happen even when all the signs point to the best possible outcome.  I have been reading through all your posts and I just dont feel like I belong here.  I dont understand how you guys feel cuz most of the stuff that happens to you dosent happen to me.  I jump out of bed every morning and take a scalding hot shower..all with no problem and no meds!  I can stand in one place all day long and never feel faint or funny.  In fact the only time I have ever felt faint is when I get an attack where my heart beats 180 BPM...which only happened while upright once...the rest of the 8 or so times have been when I was laying down or in the middle of the night!  I don't have any food intolerences or bowl problems...urinary frequency...numbness...tingling...balance problems...the only thing I have is a fast heart rate and it never slows down...never under 100 even in my sleep!  I do feel a good amount of fatigue but if your heart was always beating at 100 BPM wouldn't you feel fatigued too.  I can't really tolerate any meds...I would have to take so many beta blockers to get my heart rate in the 70s or 80s that they would drop my BP into shock levels.  The only symptom I have of POTS is that I get a heart rate that sometimes goes over 30 BPM from laying to standing...but it ususally only goes that high for a few minutes and then goes back down to about a 20 BPM increase.  I had a negative tilt test only showing a 20 BPM increase.  My resting Heart rate was 140 and I went up to 160 when upright.  I was upright for a whole hour!  I never once felt dizzy or anything...just normal but I could feel my heart beating...but I can always feel the **** thing beating!  I just cant wait to get this ablation out of the way so I can get on with my life.  I have a soccer scholorship to my university and I need to get better so I can keep it.  I need to take my LSATs so I can get into law school in a year.  I have so many things I need to be doing and my stupid heart had to go out of whack on me for no dang reason in sight!  Nobody in my family has had any heart problems...of fainting...low BP or anything like that.  I havent had a virus...well I dont remember that last time I had a virus...and I've never had a major virus bad enought to do nerve damage!  I know deep down in my heart I dont have POTS but I'm scared to death and cant seem to shake the feeling out of my head.  But I'm like that though.  I need to trust my doctors I guess...he even said that most POTS patients have fair skin and are of European descent (I've noticed that too from my nationality post)  Ha I'm so far away from that it's not even funny.  I'm olive complected...dark brown eyes and dark brown curly hair...and I'm only half white (german/english) and the other half black, hawaiian, and american indian.  Gosh I'm sorry I just had to vent!  I'm going to have the ablation done and if I mess myself up I just will mess myself up.  When you are 90 years old you look back at your life and you that thing you will regret the most are risks not taken...I'm not gonna be one of those people!  I hope that each and every one of you find happiness and have your symptoms just dissappear one day...even when I get better I will still pass the word of this condition so hopefully a cure will be found one day!  Thanks for putting up with me!

Before you go getting your heart butchered, listen to my story.

Dysautonomia began for me about your age--at 19. It started in the summer of 1996, during my first vacation from college. It started subtely; I'd drink too much espresso, stay out in the sun too long or go without eating, and my chest would start to pound. I didn't think much of it. Then I started peeing a lot--twice an hour sometimes; I was scared to death that it was diabetes, which runs in my family, but it wasn't. My doctor told me to cut down on caffeine and salt; that summer, I eliminated salt from my diet. That was my first big mistake. Over the next couple months, I began to notice that I'd get palpiatations after eating, esp. at breakfast--and my breakfasts were typical American: loaded with fried foods and carbs. Before long, I found myself having to lay down and sleep after every big meal. Dizziness on standing first appeared about this time as well. I endured this for a couple of years; my heart would race after eating, and I'd sleep; but the palpitations would usually be gone when I woke up. In 1998, I started taking Adderall. For two years I lived on it, espresso and candy bars--and all that made the symptoms worse when they wore off. I moved back home after graduating from college, and in January 2001, the panic started; panic attacks would hit me out of nowhere. The next three years were ****--I could barely do anything; my heart raced constantly, I was exhausted no matter how much I slept, and my brain was in a fog. It wasn't until late last year that I made a personal effort to end all this; I stopped listening to doctors and started eating better. I ate more salt and drank more water (lots of it); I cut out wheat, gluten and all refined sugars, as well as cheese and all dairy products; and I started taking an army of vitamins and supplements.

The effect has been enormous. I rarely get dizzy on standing now, and haven't had a panic attack in quite some time. I don't get anxious. The only symptoms that really remain are the fatigue and the fog, and I plan on dealing with those soon by trying Adderall again. Now that the panic is under control, I may be able to resume it. (I still pee a lot, but that's such a minor symptom that I can deal with it and live my life). I strongly suspect that my dysautonomia was made worse by lack of salt, lack of water, and by wheat and sugar; when those were eliminated, the worst of the illness abated. I had no idea I was intolerant to wheat and sugar until I stopped eating them; the symptoms of the intolerance blended with and made worse the autonomic symptoms; I couldn't discern one from the other.

Dysautonomia doesn't necessarily hit you all at once--my symptoms progressed over a number of years; your racing heart may just be the first sign of it. Before you go having surgery, which will chain you to a pacemaker for the rest of your life, try some dietary and other changes and see if they help. Give them a month or two.

[MightyMouse]

Venting is normal... but in order to get to feeling better, YOU need to take control of your health. Unfortunately, no one here is going to be able to give you the peace of mind you need or seem to be asking for...

This means that if you're not 100% sure about the ablation, DO something about it. Get a 2nd, or even a 3rd opinion. I know I said this before, but if it's not simply tachycardia and you do an ablation, there is no going back.

Everything you are venting about has to do with your loss of control over your life--however, you still DO have control over many things. Grab the brass ring...or in this case, the phone, and find a knowledgeable EP cardiologist, one who knows ANS issues in addition to the run of the mill rythmym disturbances.

Additionally, I don't think anyone here can help you figure out if your symptoms do or don't fit. You need to do that with help. If you want to be CERTAIN, get to one of the doctors who specialize in POTS, NCS, OH, etc. They'll be able to do a "differential diagnosis" better than most other EP's you'll come across, mostly because they'll have the experience to compare how you present with your symptoms vs. the various things it *could* be and make the most informed choice.

Don't be in a rush to get your answers...sometimes the correct path is to take the time to pay attention to the details, and take extra steps. Heck, it's your future your talking about--and quite literally, the choices you make now DO matter. Yes, disorders like the ones I have limit some of the choices that I've got, but it's not as limiting as you might think. You may not believe that right now, and that's okay, but I promise it's true.

Nina

[futurehope]

Sak, I really appreciate you sharing. I especially find it interesting that you determined that milk, wheat and sugar contributed to your problems. I've seen other posts discuss how wheat can adversely affect people and that it does not necessarily show up on tests - the true test being - eliminate it from the diet.

May I ask WHERE you came up with the idea of elimimating sugar, wheat and milk?

Just curious.

Because of your post, I'm becoming more and more motivated to eliminate wheat from my diet. I already pretty much avoid sugar and milk. It's best that we remain proactive in our own healthcare.

[Sak]

Sak, I really appreciate you sharing.  I especially find it interesting that you determined that milk, wheat and sugar contributed to your problems.  I've seen other posts discuss how wheat can adversely affect people and that it does not necessarily show up on tests - the true test being - eliminate it from the diet.

May I ask WHERE you came up with the idea of elimimating sugar, wheat and milk?

Just curious. 

Because of your post, I'm becoming more and more motivated to eliminate wheat from my diet.  I already pretty much avoid sugar and milk.  It's best that we remain proactive in our own healthcare.

Why did I eliminate wheat and sugar and dairy? Desperation. It was suggested to me, and I tried it; I had no other options left.

Refined carbs, when metabolized, act just like sugar on your body; so if you have sugar sensitivity, but still eat breads and bread products, you're only doing half of what you should. Carbs and sugar are energy foods, but they upset the delicate balance of the nervous system in even normal people when eaten to excess; and esp. so in the case of dysautonomics.

And don't just eliminate wheat--eliminate all foods containing gluten. It's in everything, so you have to watch. I eat a lot of red meat, chicken, fish, fruits and some vegetables; but I won't touch breads of any kind--not even cornbread, because cornbread mixes invariably contain wheat or gluten.

Supplements that you find at GNC or hippiemarts can also help; I take shark liver oil, vitamins C & E, selenium and deodorized garlic daily. But watch out and check labels--there's hidden gluten in a lot of that stuff; but GNC is very good about this; many of their products expressly say NO GLUTEN NO WHEAT and NO SUGAR. (I also take sublingual B-12 on occasion.)

[Guest thisblows]

Nina,

My EP says he has diagonsed POTS before so I guess I gotta trust him when he says I dont fit the profile for it...all I know is if I can't slow my heart down, it will enlarge and I will die...I can't tolerate beta blockers so an ablation is the only choice. Also I can't travel to see other doctors that deal with ANS issues...1 cuz there are none that I can find in California and 2 because my parents wont pay to send me to them. My parents trust the doctor we have here and I guess I do too. I just got a few pre operation jitters I guess. Also I have already had 1 ablation attempt and although it didnt work (well it did for a week or so) it did not make me worse at all. In fact, I feel like I have a little bit more energy now than I did before I had it, also my heart rate was slowed a tad bit. All I know is I can't live like I am right now and this is my only chance to get better. So I guess a girls gotta do what a girls gotta do!

Oh yeah and as far as dietary changes...I am so scared over this that I havent really eaten too much of anything for three months. I'm hungry; starving most of the time but my nerves are too upest to eat. oh boy and I DON'T need to loose any more weight!

[MightyMouse]

I don't mean to sound rude, but having diagnosed a disorder before doesn't make one an expert. My apologies to any physician's reading this, but many docs can be a bit full of themselves. If you trust him, that's great. However, it seemed like you weren't completely convinced in your original post, above.

Even if you cannot go to an ANS expert, you could get a local 2nd opinion. I would suggest finding someone who is in a different cardiology group than the doc you see now so that he/she can form their own opinion.

Nina

[Michelle Sawicki]

Hi!

It is normal to be a bit worried and have reservations before surgery. A second opinion could put your mind at ease. It might also help if you talk to others who also have the IST diagnosis. There is a support forum for IST at:

http://inappsinustachy.proboards13.com/ind...action=register

I don't know anything about this site or how accurate their information is, but you might want to check out http://www.geocities.com/inappropriatesinu...hy/support.html. They are the owners of the above forum.

Best of luck!

Michelle

[Merrill]

Couple thoughts--maybe more than 2:

* Getting a second opinion before surgery can't hurt--makes a lot of sense, actually, if you're in doubt. But from everything you've written--on this post and in past posts, even going back to your very first--it sounds like the right kind of physician for you is a cardiologist/electrophysiologist. And if your doctor has diagnosed POTS before (and understands what it is, what to look for, and has put you through the appropriate autonomic nervous system tests etc.) then it seems to me that you don't need to seek a second opinion from a specialist in the Autonomic Nervous System. Get a second opinion from an experienced cardiologist who has lots and lots and lots and lots of experience treating patients with Inappropriate Sinus Tachycardia. There may be more than one possible type of treatment--and together with your parents and/or other adults whom you trust and love, you need to then choose what's best for you. While it's true that symptomatically there is overlap between POTS and IST--mostly pertaining to heart rate--you've provided so many details in your posts about your test results and your many many capabilities that point to IST and not POTS.

* I hope that as you're exploring POTS on this web site, you're also researching IST on other appropriate web sites. There's so much to learn and understand about this condition.

* In my every waking hour, I know that my heart beats as fast as yours does, and sometimes faster. I've had this since a teenager, and that means it's been beating fast for more than 30 years. My heart is still of normal size and structure. I'm telling you this because I hope to take the edge off your fear. You have the time you need to do any research you want or need to do.

* You sound like a person who's excited about life and all that lies ahead! So many exciting things are in your future! When I read about your athleticism, your energy, your ambition--my own heart quickens! Go for it--ALL of it. It's true that you've got a hurdle to jump over right now, but you have the motivation to do exactly that. I hope you'll do what it takes now to nourish yourself, body and soul. And that means RELAX, first and foremost... (your appetite will then return, and it's important that you let it!) Let me recommend some things: read Andrew Weil's book "Spontaneous Healing." (It was recommended to me on this site by someone else, and I got it, and now I want to recommend it to you.) Read poetry (may I recommend Mary Oliver?) Read Buddhist philosophy. Read "Be Here Now" by Ram Dass. And if it turns out you are indeed getting ready for surgery, absolutely positively you must buy the Surgery Pack (CDs or tapes) from www.healthjourneys.com. Listen every day; it prepared me for my own surgery last summer and it did wonders for me.

Best of luck to you--keep in touch and let us know how you're doing. (I pray that some day you'll change your post name to LifeIsGood!)

Merrill