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Does Pots Progress Or Stay Static


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Just wondering if peoples' POTS symptoms have gotten worse (progressed) since their original diagnosis, or have they stayed consistent.

How long can these symptoms remain static?

If my primary symptoms are postural tachycardia, brain fog, concentration problems, dizzy, headache and brain symptoms, will I eventually progress to the GI symptoms? I know each person is different, but is there a progressive trend with POTS?

Anyone in NY or CA with a thorough dysautonomia specialist they would recommend?

Thanks in advance

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My symptoms are quite similar to yours and I'm sorry to say mine have progressively gotten worse in the 20 months since this first began. Only a few weeks ago the nausea and cramping became much worse too, but that might be due to the addition of Mestinon.

On the other hand, overall I feel better than day one because of all the meds I'm taking, but when I forget a dose I'm back to my worst, plus some.

Remember though, we're all different and also keep in mind the younger you are the better your chances of recovery, or in some circumstances complete remission.

I'm very happy with my PotsDoc, who I found right here on Dinet. If you're in NYC he's about 40 miles from you in West Orange, NJ. Dr. Nicholas Tullo, Consultants In Cardiology. 973-467-1544.

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Well mine got worse but now seem to be getting a bit better. I went through a series of different symptoms that didn't last. The reactive hypoglycemia for example, then it passed. So I am feeling better than I was but I am not back to my normal.

lieze

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I've heard that POTS can be rather cyclical, with really low times interspersed with better times. For me personally, I've had OI/NMH for about three years now, and I'm now at the lowest point I've been. I can hardly walk and am hoping that I don't progress to being bed-bound. Of course, it's possible that I may come out of this on an upswing, too. And yes, the younger you are, the more likely you'll come out of it.

Cheers,

Jana

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Before I was dxed I was in and out of flares. Bed bound but not like this. I'm slowing losing more of myself over time. Even what I could do a year ago I can't do now. I waiting for that magic potion to be made and let me be me again.

bellamia~

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My key symptoms are a lot like yours. I've been spared GI troubles thankfully, other than some nausea at times but not so often. This has been the case for me for a very long time so I expect it to stay that way for me. I've had stuff get worse over the years apparently timed with specific injuries and the like, but haven't seen an inherent progressive nature to my situation. I can pin some variation on specific aggrivators like heat and, of course, stress of various sorts. Other variation seems pretty random.

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I pretty much have the same symptoms you described.

I was bed bound the first month or so that I got sick, and then I very slowly got better little by little.

I have the occasional days when I feel almost back to normal, and then the occasional hours where I feel really bad, but never back to square one, but I have more good days / hours than bad. I have had two 'crashes', and even while in these I have never been bed bound again.

Looking back over the last 18 months I'd be more inclined to say that my illness is not progressive.

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I find that there is no predicting of ups or downs for me. Sometimes I'm better. Sometimes I'm worse.

But, if you looked at my entire life as a whole, this disease is progressive in the sense that it was not affecting me or my life, and then it did. Obviously, I'm not as well as I used to be, or I'd be working and living my life like I used to do.

So, I can honestly say I used to be a more productive member of society than I am now.

It's is very difficult for me to ascertain the course of this illness because my symptoms are always present, sometimes worse, sometimes better, but always present. But, whether I can say "I'm one step closer to death" because of a worsening of this condition, all I can say is "heck if I know?" The way I see it is, I'm one step closer to death anyway because I am getting older each day.

So, to answer your question of "Is this illness progressive?" Well, yes, we're all progressing towards death one way or another, but I have no idea whether having this illness has altered that progression?! I actually do not spend too much time concerning myself with "where this is going", but instead spend more time on "living (or coping) with my disability in the moment". TMI (too much information)

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hi..

if u draw the long line my pots have def progessed in me.. When i was a litle girl i think stomac ace and nausea was the worst, along whit weird puls and mild dizzynes and stuff like that .. Then i got more mild symstoms that would grow stronger.. At the same time I have had worse periods than now (not being abel to sitt at all etc).. But that was before meds, and after meds when i tryed to work again..

Now my symtoms is all over the place, and they are not the same from day to day or week to week.. But I am never symtom free any more..

My cardio hoped i would grow out of it.. but i didnt.. many do, most I am told.. I am over 30 so, and had it most of my life..

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lieze-

I recently was dx with hypoglycemia. Did you do anything with the dx?

Quite frankly, I am overwhelmed and can't handle even making phone calls to doctors I have to call. I don't have a clue what I am to do with this information. It's not like we could determine the smptoms between hypoglycemia and dysautonomia.

Any suggestions appreciated -

Noreen

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My symptoms progressed, but it was because I had other undiagnosed conditions working against me! Now that I've got some of those treated, I am doing better with the severe fatigue, nausea, brain fog. I think we should all be cautious of assuming that every single symptom we suffer from is actually POTS or dysautonomia. It's really easy for doctors to just shove all of our complaints as complications of POTS. My PCP and EP tried telling me that MVP was the reason for all of my problems (fatigue, racing heart). That was until my echocardiogram showed no MVP. Whoops! Then they had to start looking for other problems, but if it had shown up they were fully prepared to blame MVP. :blink:

I found out within the last year that I have adrenal insufficiency, sub-clinical hypothyroidism and several food allergies that mimic a lot of POTS symptoms. Remember that POTS is JUST a collection of symptoms! ;) Those symptoms might just be something else too, which is what happened with me!

If you have gastrointestinal problems, I suggest getting tested for IgG food allergies. I finally figured out certain foods were causing A LOT of my gastro symptoms.

Good luck everyone.

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If you are still looking for a doctor in NY, I recommend Dr. Marc Pecker. He is at Columbia Presbyterian... next to Dr. Grubb he is the most knowledgeable doctor that I have seen regarding POTS. I either found him through DINET or through the NRDF, if you go a search for him he should come up.

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I also use to worry if my pots would get worse. From what I read, I know that is possible, but I have had pots now abou 2 years, and have very slowly gotten some better, but mine was not as severe as some others in that somehow I managed to keep my job and work, but had to go to part time. As you said, everyone is different, and it is hard not knowing. The first year I felt really bad most all the time, this second year, I have more good days. I keep a journal, and write down what I did that day and how I have felt. It is helpful because if I get discouraged I can look back and see that I have been able to do more than I used to. Someone else mentioned it seems cyclic and I would agree. I had been feeling alot better, then for no apparent reason, I had two weeks where I felt bad again. One of the most important thing that helped me was finding a dr who was experienced with pots and gave me hope.

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