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Bigskyfam

How Long Have You Had Pots?

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When I was looking at a searched post for household chores due to my lovely flare after trying to mop after cleaning the house... All day process. Anyway, I saw so many names I didn't recognize. I wonder how many members are on here. I hope to be a part of the dinet forum even if hopefully I pull out of this pots thing. 9 months strong. Thanks for being there for me

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I've had severe, debilitating symptoms for 7 1/2 years now....don't forget I also have EDS and MCAS so it's not just POTS keeping me down. However, I have had milder degrees of each of these 3 syndromes all of my life but never was severe enough to look for an explanation that tied all of it together until 2007. That's when it felt like I hit a brick wall.

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I've been symptomatic for well over 20yrs but very debilitating for the last approx 8yrs. It's been a lifelong battle and has always affected my daily life to a certain degree.

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Hm, I am really not sure. And though it doesn't make any difference NOW, I would very much like to know. I had very mild symptoms from my ANS during some periods of my life, but never regarded them to be more intense than that what half of the Population experiences. By no means I had something like Pots before 2-3 years. I would remember the symptoms for sure.

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Diagnosed a year next month, started showing major symptoms a year ago this month, and according to one doctor, I've probably suffered with this for about 7 years, but it wasn't until I had two heart ablations for PVCs that it reared it's ugly head. In the year since it has though, I've gotten completely debilitated, was bedridden for a bit, but am slowly gaining strength back, even though I'm still symptomatic. My bp seems to be under control now, but my tachycardia still makes it very hard to live. Hoping that changes soon.

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Tyler had a virus in December 2010 and his health kept declining. He was diagnosied in October 2011 POTS and things have not gotten better yet.

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Last year at this time, I started going downhill. I fell off the wagon entirely about 9 months ago. Since then I have went through spells where it gets real bad, and spells where I think that I can get better.

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Guys. Mine hit full force oct 5th after my lunch date with my hubby. I saw somewhere about the increase of pots flares/dx in the fall. Intriguing!

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I've had signs since I was a very young girl, but it only affected me in certain environments or situations. At age 16 (I'm 30 now) is when it became significantly harder to live life, but I still managed to go to college and work for a few years. Then at age 21 is when I just could not keep going. I had to lay down at work which was not allowed and rumors started to spread. I just felt so miserable and started calling off or had my husband take me.. :( I totally stopped working at the end of the holiday season in 2005 and have not been able to work ever since. It's been really bad for about 9 years , but it's gotten worse after I got strep 2 years ago.

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I was diagnosed a year ago in March. It has been a battle ever since. However, with the proper treatment, I have had progressively more "good" days than bad days.

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I've had it since age 18 after a bout with mono. I remember being in college and my heart pounding out of my chest as I walked up flights of stairs. I just thought I was out of shape. I'll be 40 this month so 22 years.

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Have a good sense of humor.

Don't wallow in it.

Accept and be kind to yourself.

The doctors will only care as much as you do, so if you don't push, neither will they.

Do everything you can to get better, including but not limited to going to every doctor you can get your hands on until you find answers (I went to over 30 before i found my current team and started getting answers that made sense.)

Take nothing for granted, not health, or happiness, or family and friends.

Appreciate even the tiniest of things that make you smile.

My pets really are some of the best nursing care around.

Nothing is forever, not even POTS....I have a couple good days a week.

Life is truly what you make it and I choose to be happy and in good spirits inspite of POTS and whatever else ails me.

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I've had symptoms since teenage years got severe 6 1/2 years ago age 29, it was the worse the first 3 years and gradually started improving. My blood pressure is mostly low normal now and the fatigue has never changed...I learned to fight through alot of my symptoms, having to raise children and taking care of them cannot be but on hold so I push myself alot! Which in return puts me in the bed any chance I get. It's a vicious cycle...I've also learned to get negative stressful situations and people out of my environment it seemed to hinder any chance at natural healing within, and it made me sicker.

I'd rather wear myself out physically than mentally because mentally tired is just too hard to deal with.

I seen over 50 doctors throughout the 6 1/2 years, when one doctor doesn't listen or acknowledge your complaint find a new one. I've had doctors completely ignore major pains and symptoms and wouldn't be here today if I didn't trust my instincts! And try your best to not let medical stuff consume your entire life. Have a sick-free time where you focus on any and everything other than sickness, we need that normalacy mixed in.

Sorry if I said too much:) it's been awhile since I've been on the site.

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I got sick on April 25, 2009. I've been disabled and mostly bedridden ever since.

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I developed severe fatigue during a bad "flu" approximately 4 years. The fatigue never resolved. I did not recieve a diagnoses of POTS until this January, when I was hospitalized for a week because I couldn't get out of bed without HR ~160 and immediate pre-syncopy.

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Nov. 10, 2010

i've had a lot of good days, seeming "remission" to a degree, but recently relapsed.

a lot of the names on the forum are different than when i used to visit.

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Hi Jen!

I found a response from you regarding POTS and an IUD and was wondering if you can tell me your final outcome of the IUD. I have hyperadrenergic pots (not even diagnosed for a full 2 years) and my periods make my symptoms unmanageable. I have a 9 year old, 3 year old and 7 month old and I need to be able to care for them. Ironically my initial symptoms of POTS started 8 weeks PP with my middle child which also coincided with the insertion of my IUD so I quickly had it removed bc the anxiety was horrible. I was doing very well for almost a year (I did have some issues with pregnancy and BP) up until about 5 days ago. This is my 3rd cycle since child birth in October and 2 out of the three have been terrible. Today I am wondering if getting an IUD and stopping the periods completely may be my answer. I got my first IUD at 28 and never had any noticeable POTS symptoms until the IUD was removed (in order to have a child). Thank you in advance for any advice. 

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