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How Severe Would You Say Your Pots Is Vs How Severe Your Doctors Say It Is?


Severity of POTS  

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I have been told from my doctors I have a mild form of POTS (due to my holter monitor results only showing mild sinus tachycardia), that my symptoms (GI issues, breathing problems, chest pain, fatigue, dizziness, etc...) aren't symptoms of POTS, and that because I have a mild form there is no way it can be causing interference with my life activities. I was diagnosed with POTS because of a tilt table test. I acknowledge that I do not have a severe form of POTS, because I do not faint, I do not have orthostatic hypotension, I can work full time and can do some life activities (like grocery shopping). I acknowledge that many of you have a lot worse version of this disease than I do, and/or are a lot more affected by it than I am. But even though I do not have a form of POTS that is severe, I do have a hard time doing housework (for example: unloading the dishwasher causes me to be out of breath, have bad chest pain, get dizzy, and feel like I have to sit or I will fall over), going up stairs, walking for long distances, walking fast (for example if I walk fast for a long distance (my chest hurts, its hard to breathe, my eyesight starts to go dark, I get dizzy, and have to sit) standing for periods of time, working 8 hrs a day (by the afternoon I am soo tired, my cognitive skills have drastically declined), and social activities exhaust me after a short time. I also know that at my current state with POTS, that I would not be able to keep up with children. I want to have children, but I am currently unable to run after them (I know this from experience with my 2 year old nephew), pick them up and carry them, and play with them for any length of time as I am constantly fatigued and have little energy.

Therefore I was wondering, whether your doctor's agree that POTS is affecting your life, even if you don't have a "severe" form of POTS?

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I think the extent of orthostatic changes and tachycardia can be markers for severity. eg when I was the most sick with POTS my standing hr was 160 bpm (going from 80's lying down). I was disabled at that point. However, I was not ready to go back to work a couple months later just b/c my tachycardia was controlled with a beta blocker. In addition, I have noticed with flare ups that I do not always have significant tachycardia or even much of an increase in hr on standing, yet I still can feel weak, dizzy, nauseated, etc. My doctor has always said that although the TTT is a marker for POTS he also listens to how a patient says s/he feels to determine what treatments might be needed and how severely ill the patient is. Sounds like maybe a different opinion from another doctor might help? There are treatments that could improve how you feel if these are POTS symptoms.

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My son's doctor has listed on all his forms we need filled out for school, etc...'Severe POTS'. The doctor did not base this on any test, but by what we tell him my son is experiencing..symptom wise,etc.. He has no life and the doctor is stunned at how little my son does socially, rarely leaving the house,etc. This is from our local neurologist who specializes in autonomic disorders.

The doctor at the Mayo Clinic last year said my son was in remission and said my son is 'POTSEY', meaning he doesn't have POTS just POTS symptoms. This was based on a 10 minute TTT that he took while fully medicated and even though the poor man's tilt he did in his office clearly showed POTS. Thank goodness this is not the doctor treating my son since he is not really looking at the big picture.

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We are really the ONLY ones who truly know how we feel. I agree with the moderator, in that you don't have to have tachycardia to feel sick, either. :unsure: There are so many facets to this illness, and if one is better one day, than something else crops up the next. I would say with medication I am alot more functional. I was getting to the point of severe, because my symptoms were progressing wildly without treatment, (vertigo),to the point where I couldn't do much of anything without being exhausted and I couldn't drive. Now with treatment, I have a moderate form of dysautonomia, that goes from one body system to another, potpourri for lack of a better term. Some days I have chest pain or tachycardia, others GI trouble and nausea, another bladder issues, sometimes dizziness and unbalanced gait (falling), shortness of breath, tremulousness, tinnitus, and other nerve issues, too. Just never know, and I take it as it comes, trying to make the best of life, resting when I can, and praying through it all :)

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Good poll. it's an issue for alot of us I think.

Like you Forevertired - my tachycardia is not so bad these days but i feel ill alot of the time. It is many faceted - I can't tell from one hour to the next how i will be and which symptoms will be next.

I do get frustrated with the doctors. The other day my doctor raised her voice saying she can't help if i just explain my symptoms by saying"i don't feel well" but that's exactly it - i feel ill. Somehow it doesn't count unless i can be more specific.

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It's an interesting poll! My cardio said that she hasn't seen a correlation between the "severity" of the tachycardia and severity of symptoms. My HR only jumps to the mid 120's, but I'm only able to get out of the house 1-2 times per week (and that's almost always if someone is with me), and only on a very good day can I sweep the floor, or empty the dishwasher, etc. i'm interested in hearing other's responses :)

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My doctors have not really said how severe my symptoms are but many did not seem to take my symptoms seriously. However, I have only seen one POTS doctor and have not been to Vand/Cleveland/Mayo-dysautonomia. I did go to Mayo Rochester Neuro but they did not figure out I had POTS and I had not been diagnosed with it at that time.

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i remember my doctor (neuro prof) told me that although he hadn't seen very many people with pots/dysautonomia he was sure that no one he saw had it as bad as i did. his tone was as if i had won a prize which made me laugh but i was very determined to try my very best to graduate from being number one to being number last! not sure if i completely succeeded but at the same time i know that there aren't many people diagnosed here in the netherlands.

i do know that i was as bad as my doctor told me, he really needn't have done that!

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  • 2 weeks later...

The first cardiologist I went told me I had mild POTS. Today I went to my fairly new cardiologist and he told me it was severe. Who knows? ;)

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It seems like "POTS" may be caused by many different things. It is good medicine has chosen a cutoff for diagnosis and research that can be measured with a tilt test. However, simply looking at numbers for an unexplained illness. ( ex. Deciding your tilt test HR went up 29/min, you do not have "POTS" even if you have symptoms, or your HR went up 60 you have "severe" POTS is very arbitrary. )

If I went to the doctor feeling terrible, and he could not why I felt terrible but said my fever showed I was sick but not very sick, I would get another opinion. Comparing the high fever with a strep throat to the low fever with a rare but deadly viral illness would not be useful either.

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  • 2 weeks later...

I dont know how I want to answer the Poll. I was told by UH that my case was in an advanced state. At the clinic they wont give me a ratting or any real thoughts on it. I think its bad but its due to I deal with it day after day.

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My symptoms are disabling to the point where I can't work or drive now. However, my doctor wouldn't say i have "Severe POTS" I don't think, he said I don't have autonomic failure or any of the known conditions that can make the condition progressive, etc.. yet my symptoms worsen on their own from year to year. My HR isn't always increased by 30beats, it's inconsistent, some days they catch it, some they day.. I can still have some symptoms lying down etc... so I dont have crazy high HRs, I don't pass out, just feel faint.. and my doctor agrees you can still have these symptoms in absence of the tachycardia.. and he knows I'm unalbe to work and am trying everything I can to get better, but knows my body has honestly not responded to anything. Not exercise, meds, etc... so he calls my case "treatment resistant" thus far.

Anyway, don't know if that helps.. but yes, I don't think my POTS or neurological testing comes up "severe", but my symptoms greatly interfere with life to the point I have trouble with work and other normal daily activities.. so symptom wise, I think i'm more severly affected.

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  • 2 weeks later...

Hiya,

Interesting poll.

My Consultant doesnt call it severe POTS he calls it Unstable POTS and feels it is unlikely to ever change due to the EDS I also have. Plus my sister also has Unstable POTS and is treated by the same consultant as me. There is obviously some genetic influence at work with us as we both use wheelchairs, although my sisters POTS came about when she was 14 - more than 20 years ago. I had symptoms but they weren't debilitating until 11th January 2007 - yep I know the date and time it started.

One symptom we have never shared was ptosis.... until yesterday when my sister developed it for the first time.

I just wondered if they call it severe / unstable POTS when you have more involvement of the autonomic nervous system - as in it affects your breathing, temperature control, post prandial hypotension etc?

Thanks

Rach

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  • 1 year later...

Rach I have breathing,bladder, and Hypertension(my bp goes up) involved and it is still called mild from my neuro. I guess compared to what I read on here I could call myself "mild". In the sense I am not bed ridden and can still function in society. That I do feel very lucky for!

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All I know is that the cardiologist has said my son is on the severe side of POTS. He was bedridden for several months in the very beginning of his diagnosis. He has only had a three month period when he could stand up and walk for about 10 minutes. Since having the flu in January 2013, my son has not been able to get back to this level of functioning. Our cardiologist has said it will most likely be a long hall. He has tremors from the waist down but is able to transfer into a powered wheelchair to take care of bathroom needs. His tremors have gradually gotten worse and he has not been able to go to physical therapy since tremors are nonstop. Currently waiting on blood test results for autoimmune disorders.

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I have been told I have mild POTS and that many of my symptoms most be from something else, but so far no one knows what that "else" is. I am currently unable to do much of anything, except in a total opposite to most POTSies walk. Walking seems to be the only thing I am good at. Can't bend, lift, kneel, squat, do stairs, drive, etc.. I am able to sit, walk and prop up to sleep. I am glad I can do those three things, but things seem to be progressing and am able to do less and less activities. Because medication is somewhat controlling my bp while I sit and walk, they think its ok.

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I would say my doctors think my pots is pretty serious-not deadly- but severe.

I actually went from having doctors not think I was sick to having my cardiologist tear up and say "I'm so sorry" after my tilt table test. The doctor who administered my tilt table test was so kind and encouraging. He thought I was a "hang tough" kind of person and that I wouldn't go down without a fight. It made me feel so affirmed and understood to finally have doctors that "got it".

Just judging from what others have posted on this site I'm guessing that some of my numbers are pretty extreme- even for pots. It wasn't uncommon for me to have a 100- 140 bpm increase in heart rate and I'm not talking about a few beats of tachycardia. The whole 30+ increase for me for the diagnosis kinda scares me because I know my resting heart rate can be in the 40's and my standing can be in the 190's.

I think doctors do tend to look more at data. It makes sense. I personally am just thankful that I almost never pass out- I always can tell when my Bp is getting low. I can't imagine how hard it is for those of you who pass out frequently.

Also my pots (because of it's really "hyper" component) may be viewed my doctors as trickier to treat than "normal" pots. It certainly doesn't me that I'm any sicker than "regular pots", but from a doctor's point of view they seem to be fairly selective and rigid in terms of what medications I've been allowed to try. Doctors in general seem to worry more about high blood pressures than low ones...but high ones don't make you pass out and break your nose!

So yes, every time I see my doctors I feel sad that I'm cured, thankful that I'm no longer bedridden, and I feel understood. It only took 10 years! Lol

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  • 3 weeks later...

Actually, I asked my Cardiologist to rate my POTS based upon my Tilt Table Test results alone and he said that I was about a "5-6" (with 10 being the worst cases he treats). So I guess this would be "moderate". I am able to work and function socially, though sometimes it is a challenge. I guess I agree with him that I have a moderate case.

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The consultants put all my symptoms down to ME/CFS and never really bothered to explore them. No GP I have seen really understands and even when I give a fairly brief but info packed explanation of my symptoms, they can't take it all in and smoke comes out of their ears.

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