Strictly Pots Dx.

[jjpots]

I was wondering who has only the POTS Dx? At this point my only dx is POTS ( Two previous cardiomyopathies which they beleive were pregnancy related)and up until the last year I've done pretty well with only occasional Tachy. My cardiologist took me off my heart meds. about 3 weeks ago and this past week it was like I got sick or something and I've had a lot of symptoms since then.

I'm just wondering if other people started out without many issues and it has got worse? Is that the way it always works? Just trying to figure some of this out. I guess I probably was having some other symptons before but just didn't realize that's what they were.

If you did get worse was it temporary?

JJH

[flop]

What were the meds that your cardiologist stopped the other week?

Are you on any meds at all at the moment (for POTS or anything else)?

Sounds like you should report your new symptoms to your cardiologist + PCP right away - you may need to go back on some meds.

Hope you're feeling better soon,

Flop

[832]

JJH,

I only have POTS (and syncope but it's basically part of the pots). My symptoms have gotten worse over time, but within the realm of POTS-- they have not progressed to other conditions/diagnoses. Every time I get sick my symtpoms get worse and never get better. My doc thinks that the POTS will go away with time, or will at least improve. Studies show that most people within 5 years see some improvement. Further, typically with just a POTS diagnosis, they do not see people over 50 with it.

[pearsjon]

i am in your same boat. can't find anything other than pots,oi,and ncs. basically all the same.

but it has been nine years and i have progressed. i was dx in june of this year. but like i said have been dealing withit for 9yrs.

even though i have periodidc paralysis.

i know some have come out of this, but i haven't.

i hope you are the lucky one.

[cmtaylor5]

Hi,

I have only a POTS diagnosis. I do not faint, and I really don't have true OI, because my blood pressure doesn't drop when I stand, my pulse pressure just becomes extremely narrow.

My condition was progressing until I started beta blockers. I tried just taking them when I had bouts of resting tachycardia, but that didn't turn out to be enough to keep me from feeling really lousy and tired all the time. Until I was on them every day, my symptoms were progressing. I have now been on a low dose beta blocker for over 2 years. It took about 3 months to regain my ability to live a normal life, but essentially, I do live one.

I have occasional fluctuations in my tachycardia related to hormones, and/or if I'm doing extremely strenuous work or exercise. However, I have not had a bout of resting tachycardia in 2 years, and I don't have the vision disturbances, shortness of breath, heat intolerance, or chest pain anymore. I can now take very hot showers and baths without being weak and exhausted afterwards.

I wouldn't say that "I'm better", because I still have POTS. But my symptoms are manageable and have only regressed, never progressed, since I started low dose beta blockers.

I will say that every single person seems to be different, and since there are many reasons/causes for POTS, it's hard to say what will happen for each individual. Mine appears to be primary and genetic. My 14 year old son also has it.

Hope this helps,

Carolyn

[dsdmom]

I suppose I'm a bit confused what you mean by "just Pots." Do you mean that you have no symptoms other than tachycardia upon standing? Or do you have other issues, like GI problems, fatigue, etc... but do not have something else like EDS or CFS or Fibromyalgia?

I don't have any other diagnosis, but I have a lot of issues with the POTS.

[jjpots]

I was on Benicar for the past 5 years after my twins were born and that was for the cardiomyopathy. My cardiologist thought that taking me off that would make my tachy issues better- guess not. When I say "only POTS DX" I meant no other dx. like whatever the other dx. are that people have listed at the bottom of their posts.(Isn't that bad that i just read those things and can't remember what any of them are?)

For the past year I've had they tachy stuff with the low bp but now I've been having the '"brain fog", more chest pain/ pressure, my legs ache when I sit even if they aren't crossed, seem to get off bal. more and dizzy more but not to the point of falling or passing out and my stomach seems just more upset lately. Oh yeah, and tired.

I was so embarassed tonight. I was helping to collect money at this jewelry training I was at and for some reason a lady gave me $25 for the $10 she owed and I could not for the life of me figure how much change I owed her! It makes me mad! I know I'm not stupid but that's how I feel lately. Then I go back to thinking, this is all in my head and I'm just being a baby which also seems to be a difficult emotion to figure out.

Thanks for listening and for everyone's input.

[jjpots]

Do you know why they don't see it often in people over 50?

JJH,

I only have POTS (and syncope but it's basically part of the pots). My symptoms have gotten worse over time, but within the realm of POTS-- they have not progressed to other conditions/diagnoses. Every time I get sick my symtpoms get worse and never get better. My doc thinks that the POTS will go away with time, or will at least improve. Studies show that most people within 5 years see some improvement. Further, typically with just a POTS diagnosis, they do not see people over 50 with it.

[flop]

JJH, was Benicar (Olmesartan) the only med that you were taking for the cardiomyopathy? Have you ever been on a beta-blocker?

I know that in the UK beta-blockers have become almost more important than ACEinhibitors in treating/preventing cardiomyopathy in heart attack patients, I don't know if the same benefits would apply to other cardiac muscle damage problems??

Sounds like you need a follow up with your cardiologist asap - can you leave a mesage for him describing the problems you've had since stopping the benicar?

Hope you feel better soon,

Flop

[jjpots]

Flop,

I was only on the Benicar. I have never been on a Beta Blocker. My cardiologist isn't looking to put me on anything for the cardiomyopathy because in the MRI that they did there was only a little damage and he didn't think it warranted me being on meds. Or, do you mean on a med for the POTS? Is that what the Beta Blockers are for? I'm so confuesed!

JJH

[yogini]

I have only POTS and have had only POTS for 4 years with a good amount of improvement, I think most people on this forum seem to have something else too, though! I would think cardiomyopathy (though I don't know what it is) is a separate condition from POTS.

[ellen]

Do you know why they don't see it often in people over 50?

JJH,

Further, typically with just a POTS diagnosis, they do not see people over 50 with it.

Hey, I'm over 50 (52) and I still have POTS!! I'm not the only old lady on this forum, am I ? I have had these symptoms (fainting, brain fog, fatigue, tachy, allergies, asthma and I can't remember the rest), since I had a virus about 16 years ago, and have had some improvement, but I am still sick.

My Cardiac EP said I probably would not get better since I have had it for so long. I hope all you young people could have a full recovery, but I'm afraid some of us will deal with this for an indefinite time.

[832]

JJH,

No I am not sure why, and I don't think the researchers are quite sure why either.

But the most important thing to remember is that POTS is a symptom (like fever) and everyone has a different cause. Thus, you will find people over 50, or those who have it for longer than 5 years, etc because we all have a different root cause.

[jjpots]

Yep, the cardiomyopathy is completelly different. It's basically a weakening of the heart ms. Mine was believed to have been caused by pregnancy.

I have only POTS and have had only POTS for 4 years with a good amount of improvement, I think most people on this forum seem to have something else too, though! I would think cardiomyopathy (though I don't know what it is) is a separate condition from POTS.