A post for morgan

[Guest veryblue]

I took this topic from another forum, but I cant post there and would like to bring this topic up over here. This topic was about how do you redefine normal? Morgan refered to POTS as a wiring problem. Good analogy!

Originally posted by morgan617:

i just feel like it's a "wiring" problem and just doesn't disappear unless we get rewired. i guess that sounds depressing, but when you look at all the people who say they've always had some sort of problems, it's hard to believe you are suddenly going to wake up someday and it will be all gone."

Yes Morgan I agree, you cant just wake up nomal one morning when you have never really been normal to begin with. But what about all the people who never had symptoms? In my case, I developed my symptoms in an hour...I was playing basketball one second and in the ER the next with tachycardia. Why shouldnt I have hope that I can return to normal. Espically in my case with no trigger...no genetic underlying cause, other than a sinus infection that I had been battling for almost a year!...something just went off and can easily get back on track. Why shouldnt I have hope? Thanks for the story Mario! I gives people like me hope! Do you or anyone else have any other hopful stories? I as well as many others would love to hear them!

[morgan617]

very blue, please note that i did qualify my post with the fact that i have always been sickly. for some people, it just may be a post viral thing. like when some people get mono and it takes them longer to get well. i believe it will be a long time before we get to the bottom of what causes or triggers oi disorders. and everyone is different. when you talk about all the things you do, you are talking about things i have never been able to do, hence the wiring. if we really knew what triggers it, we'd be that much closer to finding a cure. working on a cardiac floor i saw lots of healthy very young people, who'd never been sick a day in their life suddenly out of the blue develop arrythmias. sometimes the doctors could easily see the problem and sometimes they couldn't. it could be something that ablation cured, or something they just had to learn to live with with meds. but sometimes they never figured out why, out of the blue, all of a sudden, these young people got sick. most of them were very athletic. this a fair amount of years ago and they aren't any closer to finding answers. i was not trying to depress anyone or take away anyones hope. i was simply stating something i believe to be true. some of us are just wired wrong from birth. i pray that you get well as quickly as you got sick, and i've seen that happen too. i don't give up hope very blue, but i also refuse to set myself up for the continual frustration of relapses. please realize i have been sick for close to 50 years. nothing that plagues me now has had a sudden onset. so we are very different. i apologized if it seemed like a blanket statement. i believe myself to be realistic about my own disorder, but can not presume to diagnose or wet blanket your hopes. i apologize again. we were just giving our opinions. i didn't take anyones personally and am sorry that you seemed to do that with mine. if i gave that impression, it was not my intention. morgan besides there were alot more depressing posts on there than mine and i respect those peoples feelings.

[Guest veryblue]

morgan...sorry that I didnt really understand your intentions...I was not holding grudge towards you or anything...I didnt know you were taking it personally...I wasent...just making a statement to give others hope...no grudges...no hard feelings...just praying the you too see some improvement...POTS will I feel be out of my life soon...but the image of seeing how some people loose everything is too overpowering to ever leave my mind...I will always be searching for answers...not for me but for others...I wont be one of those people who leaves town once everything is good and normal again...I am a pretty big feminist and I believe in promoting cures for womens disease because I feel that too many women are mistaken to have anxiety and indeed have true medical disorders, but are blown off as being whiny women...I'll type more later but I'm on abreak at work...gotta go back and serve my whiny customers!

[RunnerGirl]

<<but sometimes they never figured out why, out of the blue, all of a sudden, these young people got sick. most of them were very athletic.>>

Morgan, you are so right. Thank you for sharing this.

I am definitely one of those people that seemed to get sick out of the blue. One day, I'm completing a 20-mile training run for an upcoming marathon. The next, I'm in the ER with an erratic heart rate and strange panic-like feelings. That was two years ago. I STILL haven't been given a truly satisfying answer as to precisely WHAT (we know there is/was some sort of autonomic distrubance) or WHY - but I have improved over time and I am very close to being 'normal' today as defined by my perception of my health prior to my first trip to the ER. Of course, I got "sick" very fast but my recovery was slow and subtle. I still have days where I feel "off" - but the sensation is mild and short-lived compared to how it was when I first fell "ill."

After a basic cardiac workup and a various endocrine testings (for pheo, carcinoid tumors, etc.) was negative, I fought very hard with my young female cardiologist to take me seriously and not brush me off as an anxiety case. (Yes, even female doctors can harbor certain biases!) I began training with a HR monitor and noticed there were times when my HR would skyrocket (up to 150 bmp in the first minute of commencing a run). I insisted my doc give me a stress test so she could see what was happening. Only then - when she observed my HR and couldn't chalk it up to deconditioning (I was in peak marathon shape at the time) - did she realize I wasn't having "panic attacks." I actually looked over at her during my stress test (when my HR reached 140 bmp after 2 minutes of minimal exertion) and said "Do you think I'm having a panic attack NOW?"

My doc admitted she was "at a loss." She referred me to the EP in their practice - who, fortunately, was more experienced AND had seen some cases of other young, athletic people with my symptoms. His opinion is that I had/have a mild form of IST driven by a hypersensitively to adrenaline. I have some orthostatic symptoms, but mostly of the hyperadrengic kind - my HR will accelerate rapidly with movement (simply rolling over in bed will cause a jump when I'm having a spell) and standing. BP is also rather liable and let's just say I'm no stranger to the dreaded PACs and PVCs!

Anyway, sorry to digress with a repeat of my case, but I wanted Very Blue to see that there are people who have had sudden onset symptoms and improvement over time. Not everyone is this lucky and there was a time when I felt like I would never get better. But I kept fighting and I kept exercising - even when I felt symptomatic and my HR would be at 180 or 190 when it should have been at 160 or 150 for the pace I was running. (Of course, I had all the appropriate tests to ensure my heart was structurally normal and I was not in danger.) I really believe my fitness level has helped in my recovery and also helps mediate my symptoms. Of course, that doesn't explain WHY I got sick when I did. Which gets me back to Morgan's point: I have finally accepted that I will never know why this hit me when it did. After seeing literally a dozen doctors and having a $14K workup at the Mayo Clinic, I don't think I'm apt to find an answer. Even now, my diagnosis is more a theory than anything else. But I realized at some point my obsession over the WHY was preventing me from living life as best I could.

Very Blue, I hope you get the answers you're seeking. But don't make the mistake I made with my relentless pursuit. Live life as best you can each day.

RunnerGirl

[morgan617]

thanks runnergirl. i am so happy that you are improving, albeit not as fast as you'd like. stories that give us hope, even when we never know the cause, is good for all of us. thanks for sharing your story! morgan

[ramakentesh]

wow Runner Girl - again your story reminds me of mine. I too get that weird sort of panicy feeling - jittery - and i often get profound tremors when it comes on, dizziness and lightheadedness in the morning and then hyperactivity and jitteriness that is eleviated when lying down. My heat rate during the wired times can get very high with any movement. standing quickly is the worst.

It all started for me with a night of high heart-resting rate and almost fainting. The ER could find no cause for my ailment and suggested a cardiologist. He saw me for five minutes and concluded i was a nut job. I had been exercising harshly for a week only two weeks after a bad flu, and i think this brought it on. i did get dizziness and hand tremors when i drank too much caffiene in the past.

During this time i felt 'strange', lightheaded and spaced out all the time, started to get heaps of vitreous floaters, lose weight and get quite bad hand tremors, feeling very cold and trembly all day and weak.

I looked so unwell and pale, and couldnt walk far before feeling spaced out and dizzy.

My heart would pound at the slightest movement and my head always filled with blood if i bent over - my heart pounding in my head and visisble at the edge of my vision.

I went from one Endo to another as all assumed it was my thyroid going overactive. Eventually this was ruled out - although my GPs still suspect it could have had some responsibility.

My liver function went weird - possibly due to my body having to fight some virus.

I found pots on the web one day and my doctor was quick to agree.

[yogini]

I'm another one that was generally very healthy 7 months ago. I led a very full and hectic life. I worked out 5 times a week and was in very good physical shape. One day in the middle of my workout, I started feeling really dizzy and the rest is history. I have had periods over the past few months where I felt almost normal, followed by periods of terrible relapse. The first couple of times that I was in "remission" I almost beleived that I had totally recovered, but now I am beginning to realize that it isn't going to be that easy. My doctors (who admittedly haven't been the greatest) have told me that my POTS was caused by a virus and that it will dissapear in "a year or two." I have also read this on the internet. I am clinging to this hope and let's all keep our fingers crossed for one another!

[yogini]

I'm another one that was generally very healthy 7 months ago. I led a very full and hectic life. I worked out 5 times a week and was in very good physical shape. One day in the middle of my workout, I started feeling really dizzy and the rest is history. I have had periods over the past few months where I felt almost normal, followed by periods of terrible relapse. The first couple of times that I was in "remission" I almost beleived that I had totally recovered, but now I am beginning to realize that it isn't going to be that easy. My doctors (who admittedly haven't been the greatest) have told me that my POTS was caused by a virus and that it will dissapear in "a year or two." I have also read this on the internet. I am clinging to this hope and let's all keep our fingers crossed for one another!

[yogini]

By the way, runnergirl, I also have the problem of my heart rate disproportionately increasing when I do small things such as rolling over or drinking a glass of water. For some stupid reason, I never thought to mention it to my doctor. I have found this discussion group so helpful! Anyway, I will bring it up when I go to the Mayo Clinic on Tuesday. Hopefully my bill won't be $14K!