Denial

[lizb]

I would like to know if anyone feels like me. I know I have POTS, the cardiologist confirmed this by a TTT.

BUT, I still think I DONT!! because I dont have the symptoms other people have. Well I have at times but most time I feel OK. Am i living in a fools paradise or is there other people out there that feel or have felt like me? Do the symptoms progress, how long do i have, still a lot of things I would like to do before I am unable to do them. At present I am having a good spell so I REALLY think I hve nothing wrong with me!!

Confused or what!!!!! or maybe this is another symptom!! who knows?

Diagnosed POTS Aug 2006 after three years of being treated with Angina, Gallstones, Stomach Problems

Med: Tildiem 200mg per day, drink lots of water and have joined the GYM treadmill and leg weights.

Liz B

[cardiactec]

hey there,

believe me, i know what you are saying. there are many people with pots/dysauto that are so symptomatic that they cant even get out of bed....but then there are those who hardly have any symptoms who meet the criteria (HR wise) on tilt for POTS. interesting you bring this up....i was talking to a research cordinator, he was trying to get me to come to his research center for pots because he was having a hard time recruiting people....i asked him why he was having such a hard time and he said that a lot of patients they had come in for tilt met the criteria for pots (high surges in heart rates while upright, but normal when supine) that didnt have any symptoms, or who are very minimally symptomatic....these people wouldnt come back for more research testing because they felt they truly didnt have pots because they didnt have symptoms, even though they clearly met the criteria for pots with their resting to standing HR's....

i am one who is not as symptomatic as most and so i have thought for a long time that i truly do not have pots.......i have my days for sure, but i work about 26 hours a week and overall i do okay. i get pretty fatigued, but who wouldnt with heart rates of 200! thankfully the meds have helped to slow the rates and get me feeling 100% instead of 80%. a lot of people here would probably say they were more at 40% function, perhaps even less. certainly everyone responds differently to autonomic dysfunction. it is strange though, my heart rates i have been told are the highest that most docs who specialize in pots have seen, and yet i seem to function OK, better than the patients they have seen with rates that are much much lower....perhaps that is because i am compensating more with the higher heart rate? who knows....

dont feel like you have to feel like death in order to have a proper diagnosis of pots, because you dont. people are affected differently........

[MomtoGiuliana]

This condition varies greatly from person to person and from day to day. Hopefully you will never have worse symptoms than you have so far experienced. No one can predict your POTS future, I don't think. But, according to experts, most people with POTS eventually have mild symptoms, either with or without treatment--and POTS, while chronic for many, is not progressive.

I went through a very bad several months with POTS and now am highly functional. I do need to take medications however.

Just out of curiousity--why did you have a TTT done--you say you are feeling quite well now, but what symptoms were you having that led to it?

Katherine

[Rachel]

Hi Liz,

Welcome to the forum. That's great that you don't have severe symptoms.

The severity of POTS varies greatly from person to person. My health has varied a lot over the past 12 or 15 years that I've had POTS. At times my only obvious symptom was nausea. When I was first diagnosed with POTS I was a year-round competitive swimmer and was in otherwise excellent health. I started having difficulty breathing at swim practice and in swim meets, but all of the tests showed that I had an excellent heart and lungs. Eventually a nurse pointed out that my heart rate was fast. That's when we got on the right track and found POTS.

I had a lot of ups and downs with POTS and NCS for about 2 years, and then I was fairly functional for about 6 years. I was able to be a camp counselor for 4 summers, and I was able to finish a 4 year bachelors degree. Only those who knew me knew that I struggled a bit with my health. The last 2 1/2 or 3 years have been very difficult health wise. The doctors don't know why it has gotten so much worse.

Anyway, all that to say, the severity of POTS can vary over time and from person to person. So you can feel pretty good, but still have POTS. Enjoy the fairly good health!

Rachel

[lizb]

Sorry, not quite got the hang of replying, i'll get better!!!

Liz B

[lizb]

Hi thanks to everyone who replied, it is good to be able to take part in these discussions as not one of my family or friends had ever heard of this condition, so it's good to communicate with people who know what I am talking about.

Hi Katherine,

The reasons that led to a TTT was three years ago I was admitted to hospital with severe chest pain. The medical profession went down the route of heart diease as my two younger brothers died of massive heart attacks aged 33 and 46 years old, as did my father at the age of 74. My mother also died of heart related problems. So I went on a round of tests all inconclusive and prescribed medication that only made me feel worse. In 2006 I started having problems standing, sitting and getting that strange feeling in my legs. One night I became ill while out shopping and subsequently ended up in hospital. I was referred to my present cardiologist, who is really good, not like to ones who said I was having a "panic attack" and i was emotional because of what happened to my young brothers. During my last visit I explained to her how I was feeling but it was when my partner said that I go GREY when I am not feeling well she then asked me if I had ever had a TTT and I said no!! So I got a TTT and it was positive.

Liz B

[morgan617]

I've been sick my whole life, but led a relatively normal one, (marriage, babies, job) till I was 48. I never felt well, but didn't hit a wall till then.

So I think it just varies with every one. I think some people have a low grade course that never changes, some get slowly better, some slowly worse, and some a lot worse real fast. For many it can wax and wane. Good days and bad days.

I would do anything I could, that didn't make me worse, for as long as I could, even knowing down the road, it might make my course more difficult later. But that is just me. My cardio and pcp got into a fight over whether my TTT was positive or negative. So even doctors have a hard time agreeing.

I think there are just too many variables to say, yes you've got it or no way, unless you have seen the few specialists that only deal with this stuff. For any of us to say, yep or nope would not be appropriate. It's up to you and your doctor to decide. I guess I'd just be grateful to feel as well as you do and do what you can safely do for the time being. Only time will tell if you get worse or not....good luck sweetie..morgan

[lthomas521]

Both panic attacks and POTS are linked to the same problem with norepinephrine reuptake. You can have either or both syndromes if you have inadequate norepinephrine reuptake. I have POTS, but I've never had a panic attack.

http://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_docsum

Maybe they should routinely do TTTs for people who have panic attacks?

My doctor said that the chest pain in people with POTS can be due to the heart "beating on empty chambers." Fluid loading should help that.

No one can make any scientifically sound statements about the incidence or likely course of POTS, because there aren't enough data. A forum like this, of course, will attract the more seriously affected people. People with mild illness or remission don't look for forums like this.

[MomtoGiuliana]

Liz--I am really sorry that you lost your brothers at such young ages. I can understand why you would be concerned about heart problems.

The symptoms you describe as having had are consistent with POTS.

Try not to worry about what the future may bring. There are plenty of treatments out there for POTS, if that is what you have, that are safe and effective, should you ever need treatment. MOST people who are sick enough to need it, respond well to treatment.

Glad you found the forum!

Katherine

[Maxine]

Welcome Liz--

POTS can be mild, moderate, and severely disabling.

I felt pretty "normal" until late 2000. All I had before that was heart related symptoms, and was put on beta blockers for that. I am not able to go off the beta blockers, or my tachycardia will be severe. I still get break through tachycardia even on the beta blockers, but not as bad as some of the other people I know who have POTS and other forms of ANS dysfunction.

In Dec. 2000 I crashed really bad, but did not get diagnosed with POTS until June 2001. However, my TTT came out normal----my increase in HR, and decrease in BP was delayed because of my beta blockers. I can not go off them---- Dr. Grubb still diagnosed POTS.

I didn't think I was like a lot of folks on here who have OI, near syncope, and blood pooling----especially blood pooling------I was in denial about that until the EDS doctor explained it to me, I had never looked at my legs to see------and I have bad blood pooling. My symptoms come with gravity, the longer I'm up and about, the worse I get-------------I have other complications as you can see on my signature line.

It's hard because one minute I can feel close to normal, the next I'll feel like you know what---kind of like I've been hit by a train. Then I'm trying to figure out how this happened so quickly.

I certainly hope that your symptoms remain mild like they are now---and that is possible that you may not get worse. I'm sorry about your brothers ---You still should be checked often for coronary artery disease with your family history------but I'm sure you already know this.

This stuff can be really confusing-------it sounds like you have a good doctor who wants to help you when you need it.

Maxine :0)

[jhjd]

Welcome Liz--

POTS can be mild, moderate, and severely disabling.

and sometimes it can be all three in the same week!

No, I know what you mean though. When you feel well, you're like 'no, I'm not sick.' When I'm going through an 'upswing', I tend to not visit this site very much and basically forget I'm sick. (Except of course for taking the meds everyday). Then I start feeling bad and I pop back up here whining about my symptoms again! And everytime I start feeling better, I think maybe I'm cured, and everytime I start feeling worse, I worry that this is progressing. The truth is that none of us really know what's happening tomorrow, which is hard to accept. The best thing to do is just to try to take it day by day, and take care of yourself- even when you're feeling good, it's still important to remain hydrated, etc.

Plus, times when you're feeling good are the best to advocate for dysautonomia awareness. Not that we're going to have a march on washington (faint on washington? I could just see all of us lined up at the capital now...). But research indicates that this is probably underdiagnosed and there are probably so many people out there who are just being blown off by doctors or have been misdiagnosed b/c they have a relatively mild case. So those of us who can go out in the world have sort of an obligation to do so to spread the word. Okay- off my soapbox now...

[flop]

Hi Liz,

I echo what others have said about POTS symptoms being very variable. About 2001 after a nasty viral infection (my flatmates had the same illness and one was diagnosed with CFS/ME) I noticed that I was often tachy 120-140 whilst standing up and was told the usual "you're anxious".

2004 I caught another viral illness and fainted at work. Was told the faint was just because I had a high temperature and not to worry about it. Unfortunately I carried on fainting anything up to 5 times per day. A few months later my cardio diagnosed POTS on TTT and I was started on Florinef then added in Bisoprolol. Since adding the beta-blocker I haven't had a full faint / blackout.

I have good patches where I can go for several months forgetting that I have POTS as long as I take my meds. Other times I get symptoms and need to sit down but can cope and somehow struggle on with full-time work.

The worst times are if I have an intercurrent illness. I have just had a severe chest infection and have had to have 3 weeks off sick. During these bad patches I feel awful (and seek out sites like this) but am greatful that I'm not like this the whole time.

Be greatful that at the moment your POTS isn't causing too many problems. There is no evidence that

POTS progresses / gets worse just that the symptoms can vary in severity.

My cardio told me that particularly with POTS following a viral infection that there is a good chance that it will spontaneously resolve after 3 to 5 years.

Best wishes and keep standing!

flop x

[DSM3KIDZ]

I didn't believe I had POTS at first either. I had bad nausea but that's it. I did find out that the nausea was so severe it was kinda of masking the POTS. I wasn't able to stand long without feeling sick and I thought it was just because I was sooo nauseated. Well I finally have the nausea undercontrol and now the autonomic issues are more intense. So I don't know if there was a progression or not.

I'm glad your sx are mild and I hope they stay that way or even go away completely.

I'm also sorry to hear about your brothers

Dayna

[lizb]

Thanks to everyone who replied, it really helps with the denial. I have read all the different topics and by identifing with the symptoms others have I now accept that I do have POTS. I have also accepted that I have to wear compression stockings everyday, because I thought " I'll not wear them today!! " BIG MISTAKE... I could hardly stand for a few minutes without the pooling in my legs, tachyacardia, and I had to lie down to get blood back up the way!! So yes I really now accept that I have POTS and albeit is may not be as bad as others but I have had to make big adjustments to my life and somedays are better that other, today is not a good day feeling very depressed. But I will work on it and this forum really helps

Luv LizB

[DSM3KIDZ]

Liz B hang in there. Eventually the life adjustments we make become our "new normal".

Try to stay positive and I hope you have a better day tomorrow.

Dayna

[mom4cem]

Liz,

I ditto what everyone else has said. I too go through periods where I feel pretty good, then there are times when your remember that you do have this dysfunction. I do not have the dx of POTS but they say dysautonomia. I think you just need to enjoy every day and really cherish the times you feel well. You may never progress any further and just experience some minor symptoms so don't feel that you are "doomed" to one day have full blown symptoms.

I'm sorry to hear of all your family has gone through

[sandy]

I too go through periods of feeling well, but not too long goes by before the symptoms make their way back in. But I do make the best of when I am well. I do work full time and I often push myself to be active. I did go through a rough spell five years ago that left me praticallt bed ridden for 4 months. I went to every possible doctor known to man. The end result was I had to make a trip to Dr Grubb to at least understand what my body was doing. Keep strong and Be Well

[corina]

hi lizz,

i always say that everybody has his/her own rucksack in which there is the stuff you need to carry with you. for some it is a lot and for others it is less but feels like it is a lot. it is different for all of us but it doesn't matter what's in it (and whether it's much or less) it's how we deal with it on a daily basis.

having to deal with dysautonomia can be really tough or a little adjustment, we are all different. so please feel welcome, whether your dysautonomia is bad or mild!!!

corina