Is There Something Similar To Pots That Isnt Pots?

[cardiactec]

Anyone ever feel that they DONT have pots??

...minus the past two weeks of having syncopal spells which i feel is due to florinef, I really feel like i'm in a league of my own............my doctors even say so as it pertains to my super HR's.

my HR's are super high and though they are instigated by position change, i dont feel necessarily, in general, symptomatic with standing?? i mean, sometimes i do, but it is not like what many of you describe -- like for example, the post i just put up about "how often" your symptomatic - many of you put "every day non-stop". that is NOT me.

i asked my neuro if you could have POTS just based from the clinical criteria of 30 point or more increase from sit to stand, and he said no because pots is also defined by symptoms. i AM SOMEWHAT symptomatic, but not with dizziness and the general pots symptoms that most pots patients have. mostly, it's GI stuff that bothers me........

......i asked the doc about the possibility of this just being inappropriate sinus tachy and he said "no" because the HR is super high with position change, so its postural in nature. as i have said before, and thought before, i think it's more a primary sinus node abnormality in my case because i dont get the whole dizzy effect when upright....which tells me i am perfusing quite well.

and then of course this past visit with the research doc and him being flabergasted (sp?) at the fact that i was able to drive?? i have never had problems with driving and/or sitting, and i guess he says "all pots patients do"....

so all of this makes me question the diagnoses of POTS and makes me think this is more an intrinsic sinus node/conduction abnormality....

anyone question the diagnoses of POTS??

[Rachel]

Hi Angela,

For me, I'm certain that I do have POTS, but I think there is something else very wrong too. My doctor agrees. We're just still trying to figure out what it is. My health has not always been this bad. I didn't used to be symptomatic every day non-stop. Years before I probably had "just" POTS and NMH. Whereas now I have POTS, NMH and ?

My health with "just" POTS and NMH was probably similar to what you're facing now, but my hr didn't go quite so high. If I was standing my hr didn't go over 160 or 170. But I also had IST for a while. My resting hr was always about 120, and sometimes as high as 140. But even with all of that I didn't get dizzy unless I was about to faint (which wasn't a daily problem for me). I would crash hard for a few weeks at times, but when I wasn't crashed I was able to make it through the day without help. I did need extra sleep, but was usually able to babysit or hang out with friends. By the end of highschool I was even able to be a summer camp counselor. Yes, it was harder for me than for the other counselors. But unless someone knew me they didn't know that I was challenged physically.

Everyone's symptoms vary. Even if you're not symptomatic with dizziness, you are symptomatic with fatigue. If I remember correctly you aren't able to work full time, right? You have to keep your hours down to about 20 a week. Some people with POTS can work 40 hours a week. It's hard, but they can do it. So everyone's level of ability is different.

I used to drive all the time with POTS because I didn't used to be symptomatic while sitting. There were times when my symptoms were flaring up and so I wouldn't drive, but I was usually able to. I drove for years until the weakness and fatigue became disabling 3 years ago.

I think just about everyone is in a "league of their own" when it comes to POTS. The symptoms and combination of symptoms varies greatly. Just because you're not like "most" POTS patients, doesn't mean that you don't have POTS. You're a potsie like the rest of us!!! But I'm sorry you have to be a potsie.

Good luck as you try to figure out what's going on with your health.

Rachel

[yogini]

It seems that no two cases of POTS are alike. I often feel different than other people here because I don't have any other health conditions (EDS, GI issues, etc.). But I'm pretty sure I have POTS.

I wouldn't rely too much on the polls here. The number of people who respond is too small to be statistically meaningful, and I think the people who tend to respond are the ones that are affected by the particular topic. My guess is that many (probably most) people on this forum ARE able to drive. POTS affects people at all different levels - there are lots of people here who are highly functional (and probably many more out there that aren't even affected enough to need the forum).

You may want to do a search on IST vs. POTS. It's come up from time to time before. My understanding is that the treatment is pretty similar for both conditions, although maybe people with IST go for ablations...

This is not to say you DO have POTS...I hope you're able to get to the bottom of things.

[kmpower]

Think of yourself as a unique person with self-contained functions. If you believe that your heart is beating so fast in order to accomplish a task (like perfusion of brain or other tissues), then try to figure out why it needs to do that and then help. The rates are high, but they do vary, so that may mean that there is more involved than just a nodal anomaly.

This sounds like a vague and confusing approach, but it is the way doctors used to think before Google and PubMed and double-blind-placebo-controlled studies.

If you pool, why do you pool (there are lots of reasons)? If your baroception is abnormal, why is that? If your blood is deficient such that your heart needs to send it out more often, why is that?

Your questions are always good, cardiactec, but this is a really important one. Doctors tend to treat names of conditions, (and their names are often wrong), but they don't often treat people with conditions as well as they once did.

Good luck.

OLL

[cardiactec]

I just think that people with IST are less symptomatic than those that have POTS -- and i have been telling my doc this for years, that i think this is more IST than POTS..........he said that because position is the main trigger for the tachycardia that it is POTS, but i dont get many of the symptoms pots patients have that are so life altering (and dont want them either!!).

i am just saying that, because i am somewhat limited, especially at work with that i want to do -- work in EP lab) and i feel this is more IST than POTS, i want an ablation to get rid of this so i can have a MORE productive life...........if docs are making comments like "wow, you look great" and "this isnt typical of pots patients at all" than perhaps it isnt pots and is IST! i'd rather have neither, but if had to deal with one over the other, i'd want IST because they can ablate and address the problem.....

now, more than ever though, i think the docs still go with the whole POTS diagnoses more than anything else, even though i am no where near as symptomatic as some pots patients, because i have definite gastroparesis ( signs of GI autonomic dysfunction) and also a lot of pooling in the legs when upright.....and potentially esophageal dysmotility on top of that.......i guess if it were strictly IST, i wouldnt have these other problems -- signs of GI auto dys and isigns of pooling in the legs..............??

i'm glad i am only minimally symptomatic, but a big part of me wishes this were just IST because there are things i cannot do function wise because of this..........to say it's IST would be like saying "we can fix this next monday at 2pm and by tuesday morning you NOW you can do ALL things you wanted to but couldnt before us fixing this" .............

i guess you could have gastroparesis alone with no other autonomic issues, right? and as for the pooling, i dont think the docs have quite figured THAT ONE out either, as to whether or not it is directly linked to auto dys/pots............when i asked the research doc about the connection between EDS and POTS, he laughed and said "i doubt there is any connection, i actually had a control in the pots research who has EDS and she didnt have pots"..................but on the flip, i asked phillip low about it and he said that even though he doesnt have data to prove the connection, he wouldnt be surprised at a direct link ....so......speculation, speculation...

sorry, i know i probably sometimes play "detective" too much with all this, but its only because there are things that i cannot do right now, that i want to do, but cannot. i know i should be more grateful that i can do much more than the average posty person, it's just still tough because i still have some limitations and would like to just think that this could all easily be remedied next week with with an ablation...................

p.s. there are patients that have come in for diagnostic tilt and have met criteria for having pots but believe they dont truly have pots because they can function alright.........the research assistant in boston told me this and said was part of their problem "recruiting patients" for research, because a lot of them felt they didnt even have pots but the research assistant said they clearly met the criteria.........i asked my neuro about this, asked them if you could have a resting rate of 80 supine and a rate of 160 standing, not be symptomatic, and still be classified as having pots and he said "no" because part of the "syndrome" includes having symptoms...........so then i asked him what they would classify these people as having, if it would be IST and he said "no".....so i asked him what it would be then and he said "normal" ...............???

[worththewords]

I was initially diagnosed with IST. (Although if an autonomic specialist had looked at my original ttt, I might have had the POTS diagnosis). I had an ablation and I really think that is what brought out full blown POTS. After my ablation, I had all these symptoms that I had never had prior. The ablation only helped in the sense that my HR really doesn't go over 165 anymore. It used to go over 200bpm but other than that it was a terrible decision that I will always regret. Definitely get a ton of opinions before you decide to go the ablation route.

[cardiactec]

worththewords,

why did you have a tilt in the first place? what were your symptoms when diagnosed with IST, before ablation and post ablation?

[bgsu4]

I wonder the same thing. My resting is in the 50-60 range and then I get to 90-100 when I stand. I can stand for a long time and even do light work for hours if I want. My HR's seem alot better than most but I get all the other fun symptoms alot constant eye floaters, memory/concentration problems, sensitivity light etc. My HR did a strange thing on my tilt it would cycle for a split second from 90-100 to 50-60 in perfect sinus rhythm. Dr. Chelimsky said he never saw that but said it was POTS from the other data (standind NE 800, sweat test, blood pooling in legs). The funny thing is over the past year its exercise or moderate activity that makes me feel worse. The driving thing with you is what gets me. I have had most of my "surges" while driving, the first and worst one was April 27, 2005 trying to drive home from work and I thought I was going to die. I really dont like driving now but for the most part when I'm sitting down I have no symptoms. Light really disorients me and I think that plays a big role. Clear skies, lots of light, traffic really seems to overload my system. I sometimes wonder if I have very mild POTS but some sort of other nuero thing going on. Anyway I sense from you recent posts you are having a very hard time right now (I'm starting to get very impatient with all of this also since exercise/fitness is my life and I cant really do much) so I hope you take care and pray that God helps each of us get some comfort and peace with our conditions.

[yogini]

Maybe I'm confused here, but my understanding of POTS is that you have it if you have the increase in HR upon standing. That is the only symptom you need. You don't necessarily need any other symptoms or to not be "functional" in order to have POTS. Part of the confusion here may be that different practitioners may have a different understanding of what it means to have POTS. My experience is that even among doctors that treat many autonomic patients, some know much more than others.

[masumeh]

Well, I really can't follow this one. What's the difference between IST and POTS? Why do you prefer to think of yourself as one instead of the other? And if you know your body and your medical info well enough, then why do you need your doctor's official stamp of approval? I mean, ---and I know this goes way against mainstream med--- but I think that if you know what it is, and you know what you have, then you don't need a diagnosis to verify it. I know that I have carpal tunnel, and I use a wrist brace for long typing projects to prevent a flare up. I never saw a doctor about it, and I don't need to because I studied carpal tunnel and I know that I have the symptoms, and the treatment works for me. I don't need surgery, so why do I need a doctor? Like, if you have training and thorough understanding in cardiology, (which, as you mention you are an instructor, so I'm sure you do)....then why do you need to put faith in your doctor's opinion? You know your body better, and you have a lot more time for your own case than he does. Maybe you want to re-route your treatment plan??

[cardiactec]

masumeh,

it's not that i feel i need verification or need to put more faith in doctors opinion. the reason why i want my doc official stamp between IST and POTS is that if IT IS IST, than i would need a doc to add the "official stamp" in order to procede with the treatment FOR IST which is with ablation -- i cant "treat" IST by myself, so i need a doc to add the stamp to provide treatment that i myself cannot remedy or get myself (i cant do an ablation on myself to fix my problem, unlike you who can take care of your carpal tunnel without having a doc TELL you it's carpal tunnel/go on with treatment etc) .......... beta blockers are used for IST AND POTS, but are very annoying to take and actually can add more symptoms than help to take care of the primary reason/symptoms of why you first started taking beta in the fisrt place (hypotension, fatigue,etc), and also, beta's dont eliminate my tachy completely.........so this is why i seek a docs perspective, because i cannot permanently treat the problem myself, even though i am very well trained in cardiology and know my body very well, better than docs. in the end, it doesnt matter if i know my body better than docs because until a doc agree's to agree with what you think the problem is, the problem cannot be addressed in many cases -- yeah if it was poison ivy, i could probably treat it "over the counter" without seeing a doc, but in this case, it is different because the treatment for IST isnt "over the counter".

this is what i found for the difference between IST and POTS:

Inappropriate sinus tachycardia (IST)

Also known as chronic nonparoxysmal sinus tachycardia, patients have elevated resting heart rate and/or exaggerated heart rate in response to exercise. These patients have no apparent heart disease or other causes of sinus tachycardia. IST is thought to be due to abnormal autonomic control.

Postural orthostatic tachycardia syndrome (POTS)

Usually in women with no heart problems, this syndrome is characterized by normal resting heart rate but exaggerated postural sinus tachycardia without orthostatic hypotension.

ALSO -->

"It is important to differentiate between patients with POTS and those suffering from inappropriate sinus tachycardia (IST). There are similarities between the hyperadrenergic form of POTS and IST. Clinical presentations are similar and IST appears to be more common in women. Both conditions display an exaggerated response to isoproterenol infusion and some investigators have suggested that they may represent different aspects of the same disease process. POTS patients, however, display a greater degree of postural change in heart rate and the supine (resting) heart rate rarely exceeds 100 beats/minute (as opposed to IST where the resting heart rate is often more than 100 beats/minute). In addition, IST patients tend not to display the same degree of postural change in serum norepinephrine levels as those seen in hyperadrenergic POTS patients. The differentiation between POTS and IST is important as radiofrequency catheter ablation of the sinus node can make PD POTS patients markedly worse, and rarely seems to benefit patients with hyperadrenergic POTS."

rqt9191,

my neuro told me that pots is defined by a 30 BPM increase in HR WITH accompanied symptoms and not based on HR increase alone. HR increase isnt a symptom. i think even blair grubb, in one of his writings says this as well -- both HR increase of 30 BPM or more from supine to stand WITH symptoms makes for a diagnoses of POTS....

[doctorguest]

Criteria for POTS, as defined by Dr. Low in the original article on POTS:

1. Increase in heart rate greater than or equal to 30 bpm within 5 min of standing or tilt

2. Heart rate of greater than or equal to 120 bpm within 5 min of standing or tilt

3. Orthostatic symptoms consistently develop

POTS is a syndrome - a collection of symptoms - so orthostatic sympoms are needed to qualify for POTS. Symptoms need not be so disabling that one can't function, but may include very mild orthostatic intolerance to stress, such as prolonged standing, exertion, heat, meal, etc. If one has symptoms and increased heart rate of 30 bpm within 5 min of standing, but less than 120 bpm, then it's considered "mild POTS". One other thing that should be mentioned: keep in mind that this is a research criteria - the parameters used to define subjects (patients) as having POTS. In clinical world, things can be different, but in general this criteria is useful in diagnosis of POTS. Hope this answers your questions.

Doctorguest

[masumeh]

Ok....thanks for clarifying... I think your doctor is wise to insist on the fact that your reaction to postural changes alligns you with POTS, even if you have IST as well. Worththewords (I think it was) had very good advice for you, I think, her story seems directly relevant to your case, since you both seem to have IST and POTS...and the quote you posted mentions that aggressive treatment of IST (ablation) can aggrevate POTS, as it did for her. But, if your doctor isn't your style....I think you could find another that might be along your wave length. Does your IST explain your GI problems? I think it's a pots thing...when the person has various dysautonomia symptoms (like various organ systems effected) alongside the up hr w/posture change.

[cardiactec]

masumeh,

good point -- i thought that as well -- since i have gastroparesis and simple IST would not explain the finding of gastroparesis - gastroparesis has many different etiologies, one being a problem of autonomic innervation ..........

i guess the whole reason behind me starting this post is that i dont get the dizzy, light-headed symptoms that i have been told goes with "ALL'' pots patients. i do not have this.

actually my GI problems are the worst out of everything, but does that explain the tachycardia as being POTS/auto dysfunction? (if it is pots?) ....i know someone who has gastroparesis who does NOT have pots.......so i guess you cant really say that my HR is going crazy with postion change because of auto dys just because i also have other findings of auto dysfunction like gastroparesis (bcuz there are people that have pots that do not have gastroparesis as well as people with gastroparesis who do not have pots)......it would be nice to say that because i have findings of gastroparesis which is a type of GI autonomic dysregulation, that we could definitively think that my tachycardia is also from autonomic dysfunction...............

....hard to say, but i see what you're saying -- that because i have GI involvement of auto dys, that it is more a "confirmation" type deal that my tachycardia is also from autonomic dysfunction?

[yogini]

If you look at the definitions of POTS on Dinet and NDRF, they say that POTS "may include" or "often includes" other symptoms, which means that other symptoms aren't always involved. If you read through old posts, you will see that there are few others with just a high HR, although this isn't very common. You are very lucky if you don't have any other symptoms!

I think an ablation is one of the options for treating IST, but not the only option. In some cases it totally fixes things, but in some cases not. One of the secertaries at my work had an ablation and it helped her a lot, but still has to take meds and has episodes. Since it's at least possible that you have POTS, be sure to research and get multiple opinions before going the ablation route.

[worththewords]

worththewords,

why did you have a tilt in the first place? what were your symptoms when diagnosed with IST, before ablation and post ablation?

I had the ttt because my heart rate was going over 200 and I started blacking out. My chief complaint at the time was the HR issue. Although I did have other things that I didn't connect at time time - such as blood pooling while showering, some fatigue, etc. My heart rate went sky high during the ttt and my BP dropped to 50/30 or something ridiculous like that. At that time they were puzzled, diagnosed me with IST, and scheduled an ablation.

After the ablation the fatigue was worse, I still have tachy, blood pooling, joint aches and pain, heat intolerance, etc. The two EPs that did my ablation were not familiar with POTS until I came back from Mayo with the diagnosis.

Like you, I rarely experience dizziness which I am grateful for. I had a lot immediately after my ablation but through the years it has almost completely gone away. Thankfully I don't have GI problems but I have some of the other POTS symptoms.

[DancingLight]

cardiactec,

you've gotten quite a bit of feedback, so i just wanted to add one more quick thing...

i noticed that you want to have an ablation if it is IST and not POTS and how much you want your life back. i just want to encourage you to see other doctors, get more opinions, or whatever it is you need to do before making such a decision.

there are so many people on this board who have had ablations and it absolutely ruined their lives...it was the worst decision they could have ever made. if you do a search for ablation you will hear their stories. i would hate for you to think this would 'fix' you and do it and then be sicker.

one other thing i thought about is that ANS disorders CAN be secondary to other conditions. so, for instance while i meet the criteria for POTS and NMH it is not thought that these are all caused by Lyme disease. there are other causes also....so that's another direction to look.

many of us feel like we are in a league of our own. my doctors also say they have never had a case like mine. we are each very different.

many pots patients on this board can drive, work, etc....and the fact that you are able to do some of these things is great, although i understand that you want 'more' from life.

emily

[worththewords]

i noticed that you want to have an ablation if it is IST and not POTS and how much you want your life back. i just want to encourage you to see other doctors, get more opinions, or whatever it is you need to do before making such a decision.

there are so many people on this board who have had ablations and it absolutely ruined their lives...it was the worst decision they could have ever made. if you do a search for ablation you will hear their stories. i would hate for you to think this would 'fix' you and do it and then be sicker.

I can only echo this! If I could do it over again, I would have gotten multiple opinions and most likely would not have had the ablation. I think maybe if I never had the ablation my HR could have been controlled with meds and I would not have developed so many other symptoms. Take your time with making this decision and get as many opinions as you can.

[Jacquie802]

Hi,

Sorry to chime in soo late, but maybe it would be a good idea to look for another docs opinion?? Have you tried Novak yet? He's very thorough and the best Neuro I have seen.

Jacquie

[cardiactec]

hi all, thanks for your care, concern, and personal stories regarding ablations........

i saw my cardiologist today and he still confirms this as pots and said that i am the worst case he has seen. i asked him how so, and he said "just your vital signs alone are remarkable, most of the pots patients i see have rates in the 130's and yours are in the 200's"........i asked him their level of function and he said "minimal". ............so then i told him that my level of functioning isnt "minimal", probably in between min and max and he said that just number wise i am the worst and that i have other "hints" and "clues/signs" of other autonomic problems (talking about my gastroparesis and some other things)....

maybe it is pots...........i just dont want to admit to that because i want this to be a quick fix condition, and we all know POTS is not! i will learn to accept this somehow.........

by the way, i see blair grubb in december - i have heard wonderful things about him and if there is anyone who can give me some info/insight into my case/my concerns with ablation/EP study, i know HE can.....

thanks again to you all for responding to this poll....

-cardiactec.