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What the hell happend to my life


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Guest thisblows

Hey..I am new to this POTS thing...no I havent been diagonsed yet...but I have been diagonsed with IST and have an ablation to my sinus node...no it didnt make me worse, but it didnt make me better either. My question is how do people get POTS? I'm only 20 and am a college athelete. I was just watching Tv one night and my heart started beating like 160 BPM. I was freaked and the docs in the ER just said it was anxiety...and I believed them ciz I was stressed to the max! However, the hour before the attack happend I felt fine! Maybe jsut a slight headache and the wham...I wil never have a life again. Just when I was looking to apply to law school too...oh well...that will never happen if I have POTS! I know there are several ways of contracting it...virus...post partnum...had it all your life to some extent...toxic chemcials...autoimmune diseases...trama such as an accident...ED syndrome...chiari malformations...gentic predisposition. I however have absolutly no way of contracting this. None! I do have a HR that goes up 30+ BPM and slight fatigue...but that's it. Those are my only symptoms. I can stand all day long and if my HR was lower I could resume exercise. My docs still think it's IST cuz I was sent to a neuro and he said he could not find anything wrong with my nervous system. My EP that has already performed 1 ablation attempt is the top EP doc in San Diego might I add and has seen POTS and said I dont fit the DX. How could I have such a rare disease such as POTS when I have no way of contracting it? What do you guys think? Can you guys tell me how you contracted it? Thanks.

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Yes, this blows ...

question: You say IST several times but I want to clarify both for myself and for others who might read your post. IST = inappropriate sinus tachycardia. Yes? Please correct me if you're referring to something else ... but if that's what you're intending IST to stand for, then let me share something I was told by the cardiologists (at Northwestern Memorial Hospital, Chgo) who diagnosed my POTS. One of the main distinguishing traits of POTS versus IST is that with POTS, the heart rate drops during the night when you're asleep. With Inappropriate Sinus Tach, the heart rate is elevated (typically over 100 bpm) 24 hours a day.

Have you worn a 24 hour holter monitor? (You didn't say so in your post...) If no, I would call your cardiologist and insist on it.

Also, I'm not sure why you think you have pots and NOT inappropriate sinus tach.

Are you on any beta blockers to help with the tachycardia? Frankly, being able to stand all day is extremely unlikely if you have pots... so I'd be asking more questions to see if it's really the case. (By the way, I don't think of it as a disease--pots is a dysfunction of the autonomic nervous system that causes some icky symptoms that can be managed some of the time with different medications and tricks-of-the-trade: high salt, fluid, compression socks to name just a few.)

PS I've had it for more than 30 years, I believe, since adolescence. Some years better than others. I didn't have a virus or other known precipitating cause. Just the hand I was dealt, I guess.

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First, welcome...

Second...do NOT give up on your hopes and dreams. Dreams and goals are important. Life may feel like it's over--but it's just changed direction a bit. Even with POTS & NCS, I am in a Ph.D. program. I work full time. I even have a social life (limited as it may be because I have no time between work and school!). Btw, I was captain of my high school's cross country running team--I wanted to run in college too, but my symptoms just escallated too much that first year of my college experience.

Yeah, it can really stink sometimes. There are good days and bad days...and sometimes I even have strings of several good days. In order for me to continue plugging along, I need to try to keep my attitude positive. Right now that probably feels out of reach for you--you have every reason to be really upset about what you've lost. This may sound strange, but because I had POTS and NCS since birth, I never had any time that I was feeling "normal", so I have no losses to grieve about. I really think that's been a blessing in disguise for me. I haven't "lost" anything. Oh, I should say that the positive attitude was something ...hmmm....no....still IS something that I work hard for. I have my days when I can't find it, and I use this place and my friends and family as a place to vent.

As for why people get POTS: Well, that's not an easy one to answer. There are several known reasons...and there are many unknowns too. Some known reasons: there are genetic forms, there are autoimmune immune forms, there is suspicion that a viral onset can trigger POTS and similar disorders. As for me, it's likely due to a genetic form since I've had it since very early childhood. There's a higher likelihood of getting better or going into remission when the person has a suddent onset, or viral onset.

To read lots more on what can cause POTS, see this link:

http://www.dinet.org/what_causes_pots.htm

I'm glad that the ablation didn't make things worse for you. There are a number of simple things you can try to help yourself feel a bit more normal:

http://www.dinet.org/what_helps.htm

Be sure to look toward the middle/bottom of the page for the nonpharmaceutical interventions--many are simple things worth at least trying.

Again, sorry that we get to "meet" each other because you have this disorder. I hope that you have better days ahead ...and that you still apply to law school!! <_< nina

Edited by MightyMouse
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I agree with both M?s

Are you taking a beta-blocker yet? (I'm asking early in case you don't read my long ..........post. I apologize also for straying a bit in my post.

First of all welcome to this website, you'll find a lot of great people here! Second as a single mom and an employee that works under an employer that promotes sexual harassment I've gotten a little bit cynical about life and distant with personal relationships, what I?m trying to say is I tell it like it is so I'm apologizing early in case I say anything harsh or offensive.

Third, let me just say as a POTS/EDS/OH patient that I will not let any of that get to far in my way, it might delay life but I won't ever let it put me off completely. I have a determination that hopefully will never quit and if you tell me don't or no, that just fuels my fire!

I'm a full time single mother of 6 children, I work full-time and I used to take classes half time. Before I got POTS, I would only sleep 3-4 hours a night because I was that busy. I've had to put my classes off for the past 2 years just because something had to give. It couldn't be the kids and we need income, so school was put on hold. I'm feeling better for the first time in 2 1/2 years and am thinking about resuming classes very soon, maybe even next week.

I read your post and I'm truly sorry that what you are experiencing is such a life adjustment. It is hard to be a healthy athlete and fulltime student with a life one day and have it taken from you the next. But you must never give in or up! If you want to go to law school then do it. There are people in this world with worse obstacles in their way and realizing their dreams. You can have bad days and people here are great about sympathizing but you must never, never give up! Dust yourself off, get up and jump back into the arena.

My 14-year daughter has been ill for over 2 years with stomach problems. On her bad days she lays on the floor crying with stomach cramps and spends half the day in the bathroom with diarrhea. The doctor's think that she has irritable bowel syndrome based on a 10-minute history. Well, I think their wrong and I'm continuing to seek answers for her. She is a great athlete; at baseball tryouts I would have a couple of different teams calling her and each of them trying to talk her into playing for them. She has been the only girl 2 years a row in middle school that played tackle football with the boys. Right now she's too sick to play but she's already talking about wrestling in the summer. When my daughter wants to throw herself a pity party and give up, I sit down and tell her stories about people that have it 100 times worse then her. About a little girl that my son is acquainted with and dying of Cancer and might never leave the hospital. Another 7 year old that I know about from an acquaintance at work that was just diagnosed with a fast growing brain tumor and only has 6 months to live. About diabetics, renal and chemo patients those are things we discuss. She has a good idea because she has been with me to the Hematology clinic treatment room for my IV iron therapy and she has seen first hand all of the really sick people.

Three things that I'm trying to say based on that story are: 1) if you don't believe what the doctor's are telling you then your probably right and you need to keep searching for the right doctor to help you. 2) You must have the drive and desire to accomplish above any obstacle that might be thrown your way to continue. 3) There are people out there that have bigger struggles.

What we have is a chronic illness and yes it sometimes gets us so far down that we have to take a break and seek some praise or sympathy from others, but mostly we need a good kick in the pants to get up and fight for what we want.

You can do it. Keep asking questions. Try different things that might help like medications or if you have POTS there are several little tricks you will learn here on this website. And please try to keep a positive attitude and there are people here at this website that will help you with great words of encouragement and understanding. I?m sorry, I?m not that good in the sympathy department, I?m not a bad person just have been through to many of life?s lessons I think. But I?m there for you or I wouldn?t have taken the time to have written this. J

POTS = positional orthostatic tachycardia syndrome or postural tachycardia syndrome

EDS = Ehler's Danlos syndrome

OH = Orthostatic hypotension

Thx for listening to my soap box

Steph

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Guest thisblows

Hey thanks for infor on IST versus POTS...I have had the holter done...my heart rate is always over 100...a few brief moments in the 90s when I was sleeping. I also get attacks of tachycardia that awaken me from my sleep. I didn't know you could get attacks of tachycardia when you were laying down with POTS. The only reason I thought it was POTS is that I have the 30 BPM increase from laying down to standing. Laying it's usually 110-120. Standing 140ish. I just found out from my EP's nurse today that people with IST can also have this increase in heart rate! So maybe it's just IST. I can live with the pacemaker afterall! Wish me luck. My tilt is on Thursday. I hope and pray that it's negative!

P.S. I have tried beta blockers...they make me very tired and dont seem to do a whole lot for the heart rate either...but they sure do help my already low BP drop like a brick! Can't I just have a pacemaker already!!

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Sounds like you've really had a pretty thorough workup! I hope that it all turns out to be something quite treatable for you. Again, hang onto those goals and dreams.

I'll be thinking positive thoughts for you! Nina

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Hey thisblows,

I know how you feel. About a year ago I was a healthy 41 year old. Ate right,excercised, and was in great shape. December 15th my life changed forever. Two months of tests showed I have IST, NCS, and an aneurysm in my heart. I'm on a beta blocker (Toprol XL ) now and that helps a lot. I get tired easily and I have to stay away from stairs and lifting heavy things. I just got a treadmil for xmas and I'm determined to stay in good shape. You can live with this. Accepting is the first step. Ist people have their own web site. The woman that started it has had 2 ablations and now a pacemaker. That site may help you. Its always nice to talk to people that know what your dealing with.

Take Care,

Mamah

P.S. Hi to all of you at this site. This is my first post.

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Thisblows--a follow-up to my earlier post. First, sorry I was all business and no compassion ... I was at work and reacted first to the medical piece of what you had to say. The emotional component needs to be addressed too, I think... and I agree with what others have said... Do NOT give up on yourself or on your dreams of a successful career in whatever field you choose. You can do anything you set your mind to; I urge you to not let this physical setback take over every aspect of your being! You can be a lawyer with IST, a friend with IST, a parent with IST... you are so much more than a sum total of your heartrate!

One final piece about the tests you've had and are about to have: Your cardiologists should be able to confirm what I'm about to say... As I understand it, you may have inappropriate sinus tachycardia AND experience the telltale increase of 30+ on the tilt table test (which is what typically diagnoses pots).

POTS is so rare--in Chicago, anyway--my cardiologist--tops of the department at the best hospital in the city--rarely sees it! I'm the 3rd case in the last 6 years. In fact, my case was "presented" in front of 30-some doctors...and they went back into my holter report to look for details: the hr during sleep, that can help figure out pots vs. ist. Ask again about this... but as I understand ist, the hr stays high during sleep.

I hope you get some relief soon; I can only imagine how disarming sudden onset of tach can be! I've always had it, so it's an old familiar friend. Best,

m

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Dear thisblows

I have POTS and I understand your fears and frustrations very well. You've gotten great advice from everyone. Hope you have a good doctor who can sort all of this out, as many doctors do not have much knowledge about autonomic dysfunction.

There is so much unknown about this condition, and there appear to be many triggers and perhaps causes of it. If this is what you do get diagnosed with, don't dispair. There are many treatments available. I was so sick with POTS starting about 2 years ago (pregnancy/postpartum) that I couldn't walk or stand. Now, I am working 3 days a week and caring for my toddler, and exercising again. I am on a low dose of beta blocker and low dose SSRI. I am not back to "normal", but I am highly functional.

I've recommended this book several times, it has helped me in rough periods with POTS: *Spontaneous Healing* by Dr. Andrew Weil.

It's good that you are reaching out for advice and seeking answers. Good luck and let us know how you are doing.

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tb,

I am so sorry that you are facing this. We welcome you here. I am 25 and recently diagnosed with pots. It was very hard for me because I was a gymnast and very active. Now I can't really do much around the house. I do need to tell you this, anger will get you nowhere. It's ok to be frustrated and upset but you need to focus on how you are going to deal with this. Trust me I have sat in this house for 8 months depressed crying my eyes out hating the world and it got me nowhere. This group has really helped me change my life around. Of course I still have a good cry now and then... we all do. I was told you are never given more then you can handle. I am trying to handle this as best as I can. Please find support in us this is such a wonderful place to turn. It may be hard for you because those around you will not understand what you are going through... bbut we do. I hope this make sense.

best of luck to you

mindy

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Guest thisblows

Thanks for all the great support...tomorrow is the big day! I'm not sure I'm ready for it however...to be honest I've never been so scared in my entire life! I see so many goals slowly floating off into space if I hear the word POTS. Oh God please don't let me hear that word! I'm think I'm the only person in the world who wants to have IST, surgery and a pacemaker! However I fell myself leaning towards IST now after what Merrill told me. Did you doctor give you that information Merrill? If that's the thing that seperates IST from POTS then I without a doubt have IST cuz I go to sleep with a fast heart rate, wake up with one the next morning and all this was confirmed on my holter, which was repeated twice. I know I will go up 30+ BPM on the tilt tomorrow...that's a given but as Merrill said, you can have that response with IST as well. Anyone else hear this information? I can visualize that pacemaker now...and oddly enough it's a great vision! What am I nuts? LOL!!

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Not nuts at all...well...at least not nuts about wanting IST instead! ;) you might be nuts on other ways... It makes sense to want a FIXABLE disorder instead of a chronic, life long one. NOT crazy at all.

Let us know how your appointment goes. I want to say that I hope your wish comes true...but that sounds weird.

Nina :)

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Curious about two items that appeared in the above postings.

First, about a pacemaker that could slow down your heart. As a wearer of a pacemaker (I'm on my second) as a result of an ill-advised sinus node ablation because no one knew about POTS a decade ago, I am unaware of a pacemaker that can slow your heart rate. More information from you all would be appreciated.

Second, about POTS being rare: Dr. Low told me that he believed that POTS was more prevalent than MS, just misdiagnosed.

Third, a holter monitor to see if you have POTS will not help much. One of the best tests is either the tilt table or simply a doctor with patience who can measure your bp and heart rate when you are lying down and then when you are standing up--every minute, using an automatic blood pressure cuff--until you become symptomatic. How long you can stand is really the crux of the matter!

Your thoughts?

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goldicedance

I'm so sorry to hear that you have a pacemaker as a result of POTS misdiagnosis.

In my experience and research, and what my doctor has told me, you are absolutely correct. POTS is not rare, just not diagnosed properly, and in many people it may be so subtle as to not require treatment or interfere with lifestyle tremendously. Others have it badly and then it eventually gets better on its own, but it never gets diagnosed, except perhaps as anxiety or depression. My doctor told me that it is actually believed now by those few doctors who study and/or treat it, that it is a common condition.

I am also not aware that a pacemaker slows down the heart, although this is something I know little about, except that a friend of mine has one to keep her heart from stopping.

As far as the holter monitor--I think you are also correct. The holter monitor tests I had shed no light on my eventual POTS diagnosis. The key is the observed orthostatic changes. Anyway, I would also like to be corrected if I am wrong on any of this!

Thanks!

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Guest thisblows

If POTS is so common and since it is so debilitating then shouldn't there be a bunch of people out there searching for answers to why they can't stand up anymore? I've had 5 doctors tell me that POTS is rare. Sorry but I gotta believe my docs! Also why wouldn't a pacer slow my heart down? My ablation would cause total heart block and I would be pacer dependent, so wouldn't it set the pace for my heart? Also if ablations are so bad and if I did have POTS, then why didn't my first abaltion do horrible things to me? All it did was give two days or so of being normal before the tachy came back. Also why dont the holters tell the whole picture? Do people with POTS have heart rates that are fast when laying down? I thought they only got fast with upright posture.

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Hi -- TS-- you asked me a question, so let me first answer that. Yes, the information I wrote came straight from the mouth of my cardiologists at Northwestern. I'm quite sure I'm remembering correctly, because I was concerned about being misdiagnosed with POTS when really I had IST! But no, my holter showed a drop in heart rate overnight, with a low of 67 bpm. And the p-waves, whatever they are, were all normal.

A word about the tilt table ... try not to get too worked up about it; no matter your reaction, there are trained professionals who know how to care for you no matter what your reaction. My experience: I'd never felt weirder in my life as during that test. But it's not painful--just bizarre. And it's over pretty quickly. I recommend focusing your attention during it--say to yourself on inhalation "breathe in calm" and on exhalation, "breathe out fear" -- or use whatever words you like. Dont think about your hr or bp; think about your breathing and your focus words.

I agree with what goldi says about POTS being more prevalent than we know... And also that the holter doesn't help diagnose pots. But goldi, the blood pressure thing adds information to the diagnosis, but it's the rise in hr that's the clincher. (Not everyone w/pots has bp issues.)

I always thought a pacemaker regulated heart rhythms, and that would include setting a better and slower pace if appropriate. I'm not as sure about that as I am about the other stuff above, though. ;)

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thisblows...

Generally, I would agree that it is a good idea to believe your doctors. However, I have had at least five doctors who were unaware that POTS even existed, so I am not surprised that you are hearing from some doctors that POTS is rare. What my doctor told me, who primarily treats POTS patients and studied POTS/NMH for 10 years at the Johns Hopkins autonomic dysfuction clinic (not sure of the precise name of the clinic), Dr. Nsah, is that it is believed, by physicians who study and treat it, to be a reasonably common condition. Now, this does not mean that everyone with POTS is highly disabled and/or rigorously pursues diagnosis and treatment. Various intensities of the condition exist for some reason. I certainly agree with you that there needs to be more research in this area (autonomic dysfunction, including POTS).

I can't begin to answer your questions about the ablations or a pace maker, unfortunately. I know nothing about that.

A holter monitor doesn't measure when you are upright and when you are prone, that's the main reason a holter monitor isn't a good tool for diagnosing POTS. Again, this is information from my specialist. He has never said anything about heartrate typically going down at night during sleep for POTS patients, the fact that Merrill mentioned.

You are correct that the determining symptom for POTS is, essentially, tachycardia on standing. When my POTS was full-blown, I had a fast heart rate (slightly over 100) when lying down, even when first waking up in the AM. Not all the time, but frequently.

Good luck with everything. There is a list of POTS specialists on this website, if you want to check that out.

Take Care. I know it is so tough to be feeling rotten, scared and to not have a diagnosis.

Katherine

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Just a very quick reply -- As I understand it, it's not that heart rate necessarily goes down at night for pots people; it's that hr DOESN"T go down if you have IST. My doctors looked at my holter to see whether there were changes in my heartrate as a way to rule out IST, not as a way to confirm the pots diagnosis. I hope that makes sense!

m

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This blows - welcome to the board.

I just wanted to throw in my 2 cents I suppose. I agree you should trust your doctors, but in my experience I've not had any that could make any sense out of it and was diagnosed simply as anxiety (with a nod to maybe IST at the very beginning). They could not explain my excessive thirst, urination, tachycardia at rest and worse with upright posture and movement, electrolytes imbalances, etc., etc. by anxiety in my opinion. My specialist, Dr. Grubb tilt tabled me and diagnosed me with POTS and different autonomic instability problems run in my family running the spectrum of those who pass out, those who don't, those with high blood pressure problems, those with low blood pressure problems, those whose BP and HR crash when they pass out, and then those with increased HR to maintain BP like me. Many many doctors do not believe in POTS/NCS, dysautonomia or even care to know anything about it to realize it is real. That is why you should be very careful to be fully evaluated so as not to get misdiagnosed.

Again, like others said, not everybody is severely debilitated or are at times and at other times they function better...hence, autonomic instability.

Many people are misdiagnosed...me for one in the beginning as anxiety and my mother also for years with chronic fatigue and anxiety and still has not been tilted even though all her symptoms are classic POTS. I have a nephew who passed out since he was a teenager and now is married in his 30s and finally under the care of a neurologist who treats him for NCS...usually after he passed out (as often happens) his system would regulate itself back to normal and they said nothing was wrong with him for years...until he had an especially bad episode where it could be documented by EMS did they finally diagnose him...this took years. I am adamant that there are people out there suffering with a misdiagnosis or no diagnosis. It isn't as rare you some doctors would like you to believe. Look around this site!

I wish you all the best. I'm wondering if it is possible that your heart rate is high all the time to maintain your BP as you mentioned that you have a low BP. So do I. I have always run 100/70s or thereabouts and have always had a high pulse in the high 80s and 90s...until one day...my HR shot up for no reason (except calcium...still don't know the connection) and persisted at rest sometimes relieving only to start again later or sometimes all day and always worse with standing and movement. My Holter showed a 24-hour HR range of 30 to 150+. I can only hope the 30 was when I was sleeping but I was told that was normal. Let me tell you, 150 doesn't feel normal to me and I think 30 is pretty low for a person like me who is not athletically fit.

I hope you find your answers and know you will. Good luck and stick around for support either way. We are here for you!

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Oh yea, I also wanted to add that my brother-in-law has atrial fibrilation...they cannot find an underlying cause and he has been through 2 ablations that I know of and the last one was pretty extensive of many sites of heart tissue and he still has it and is on meds. Ablation doesn't always work I guess is my point and that is maybe why yours didn't either. Also, POTS in and of itself means autonomic nervous system instability...this means the system is unstable...it can do whatever it wants up down all around the spectrum...unstable. Some have fluctuating symptoms and some have the same symptom complex. I'm just saying this because your remark about whey aren't there all these people out there trying to find out why they can't stand up reminds me of how I felt last summer...I was out there trying to find out why myself...I mean I could stand up but it was extremely fatiguing to walk around because my HR was so high. I guess what I mean to say is that there are people out there trying to figure out why they can't stand up or clean their house like they used to or walk any distance or feel so bad all the time or feel like they are going to pass out or pass out who are rejecting mental illness diagnoses as we speak....they're out there...there just aren't enough qualified educated physicians when it comes to this disorder/dysfunction but that is beginning to change finally thank God.

I'm just saying maybe you do have IST or POTS or nothing at all. Thank God they didn't say just anxiety since you are female I take it (?) It is just scary at the number of people mistreated and misdiagnosed. I pray you get correctly diagnosed and soon because I know the not knowing is the hardest part. I'm like you in that things have to make sense. It has been a difficult road so I know and I'm sure we all do what you are going through.

Just thought to add these things..sorry.

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Guest thisblows

Well I had my tilt today and horray...my EP said I passed! Gosh it was tiring though...I was upright for 1 whole hour! Good thing I wasent symptomatic! I guess that means I am POTS free! Horray! I still have long road to recovery with many surgeries and possibly a pacemaker but the pain will be worth my freedom! Thanks for everything! I still have to make sure with my neuro that the results are good but in my EP's eyes I passed! I'll have my second ablation done in two weeks! I'm so happy! Goodbye 140 BPM at rest!

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