Anyone On Here Who Has Had Pots For 10+ Years?

[jangle]

Just wanting to gauge long term prognosis with pots. Is there anyone on here who has had pots for 10 or more years. Has your condition gotten worse, stayed the same or improved? Have you noticed any other symptoms develop over the years or have you been stable?

[issie]

Yes, I've had it a really long time. I wasn't diagnoised until I was in my 40's but have had it since I was about 8 years old. I did okay coping as a teen and started really having issues in my 20's - then a whole bunch of complicated illnesses and surgeries later - it was really bad in my 30's and 40's. I'm having other issues in my 50's. I've not been on a whole lot of medicines for it - as nothing seemed to help - the side effects were worse than dealing with the illness. I do use a whole lot of natural supplements and have lots of coping mechanisms that I use - didn't know why I did certain things - until my diagnosis.

I have lived a very full, happy life. It's had it's limitations, but I've always been determined to 'LIVE LIFE' and not just let life pass me by. I don't have many regrets of wishing that I could have done certain things that I haven't done. You can find a way to do things - it takes allot of creativity to do them though and it takes longer. I think allot of my sucess in dealing with this for so long is trying to have a positive attitude and see what I can do and what I have done - and not dwelling on what I haven't done or can't do. Don't get me wrong, I have my periods of complete opposite thinking of this - but I try to keep the glass half FULL, instead of half EMPTY.

Don't know if this is what your looking for, with your question or not. Is your life over with POTS? NO, it's just the begining of a different sort of ride on the roller coaster of life. There's ups, there's downs . . .but the rides not over. Hang on and enjoy the ride - - - that's life, darlin.

[roxie]

I had it for 14 years. Like issie said it's a roller coaster and has a lot to do with how your view things

I think prognosis depends on the underlying cause. For me, I've been sick since I was 12 and no one where I used to live really knew what to do beyond the basics. I'd been having a hard time with the while teenagers outgrow it by 21 or 25 (depending who you ask). Now, I have a new dr who's pretty certain that I have EDS & am waiting genetic confirmation.

If I have EDS (like so many other with POTS) I know that will not go away but my dr believes that my POTS become more manageable through addressing my collagen deficiencies etc and I'll be able to have a better quality of life

Does that help?

[Serbo]

keeping on track, but a related questions. For those that have the EDS with the POTS how has that developed? Looking it as a separate entity from the POTS.

[issie]

I have EDS also, it is and can be very connected. It can be part of the source of the dysfunction.

With collagen deficiencies - it can affect the way the blood vessels react and the function of the heart. It's not just over flexibility - there is a cellular issue here and it can affect everything. I'm badly nearsighted and wear contacts because it has affected the shape of my eye balls - they e-long-gate and it causes nearsightedness. When I was pre-teen and was growing - they almost thought I was going to go blind because the change was happening so fast. They put me into hard contacts to hold the shape of my eye - like a girdle and it slowed it down. Thank God for that doctor knowing what to do, or I'd probably be blind.

I don't know that there is anything that can be done for EDS. Support the collagen. Things like Vitamin C and things that help to strengthen the blood vessels and skin. There is allot of pain with it. We stay in a constant constricted state with our muscles trying to hold ourselves together and upright. There is more prevalence of osteoarthritis and fibromyalgia type symptoms. Many other things related to EDS. People don't realize - how debilitating that is in itself. Then stick POTS on top of it and you really - got it handed to you. Life can be challenging.

[Jan]

I have had POTS for 14 years and am presently 55. I manage with Florinef and Lorazapam.

I spent the first two years almost bed bound. I have improved over time, learned how to manage and cope and feel pretty stable now. I never was able to return to work, AM's are still very difficult for me and I tire easily. But I can go to the store, sit through a movie (with caffeine and getting up at least once) and can go out to dinner on many days. (OK, maybe not all in ONE day) There are good and bad days, still have plenty of days I don't do anything because I feel too dizzy but I don't have that overwhelming feeling that I am dying. My blood pressure is pretty stable now.

Lack of sleep will make that day and the next day a home bound miserable day. As will getting over heated.

Menopause has helped get rid of the monthly roller coaster and the most of my migraines.

If I can move around and force myself to get some exercise, a walk or a swim, I feel better.

Overall, I think I am still improving or just learning to cope better.

[Dizzysillyak]

I've had me/cfs/oh for 22 years now but mine started out with a virus or bacteria that knocked me

off my feet when I was 34. I was a happy working mother of two at the time. I'm assuming I had pots all this time too but didn't confirm it until last year when it finally dawned on me to test my bp and hr after standing up for 10 minutes.

Many of the symptoms I started with in 1990 are gone now, which probably means that I had gluten brain

and gut damage for years. But my dysautonomia

keeps me totally disabled. My bp drops 20 pts within 3 minutes of standing up so I start to struggle after that.

While, I've recovered a bit in the last 6 years, via diet and supplements, I've also gained a couple of diagnosises. Seizures,

lung scarring and paget's of the skull..

So, of course I have no idea where this is headed ... Tc .. D

[Hope]

I was just diagnosed this past year, but I've been dealing with most of the symptoms since I was a teenager at least, if not younger. My mom says that when I was a baby my lips would turn blue, but the doctor couldn't find anything wrong. So it's possible I was just born with it.

I was doing much better in my 30's, started going down hill again after 40 and this past year has been my worst which finally brought me to a diagnosis of POTS and actually getting help with it. I don't wish anybody else to be sick, but I am so relieved to find out after all these years that there are other people out there feeling the same way and really understand what it's like!

[HopeSprings]

Well, I've had something for almost 15 years. Got sick in 1997, but not diagnosed with POTS until 2007. In 2007, I suddenly developed heart symptoms that weren't there before. I don't know if this was a progression of what I already had or if this was some NEW illness on top of the other. At any rate, I feel that I have gotten worse. This past year I have seen more muscular? type symptoms - more arm and leg involvement and it has scared me. I wish there was more history that we could look at with this disorder. it's not a new illness, but only recently really defined. I don't think there are any long term studies to even look at - maybe they need to do one, starting NOW, with us.

[ramakentesh]

Ive had POTS since 18 october 2003 - I can remember the actual date! So that's just over 8 years. prognosis for me is that I improve mos defintaely and can function 2/3 of the time quite well but I relapse.

[firewatcher]

I've had POTS for as far back as I can remember (I know I had symptoms before age 6.) I am 40 now. I have never been able to do the kinds of activity that "normal" people do. I have always been cardio/exercise intolerant. My symptoms have waxed and waned, with improvements coming during times of general good health and increased activity. Illness or injury (or childbirth) has always preceded my worst POTS episodes. I am finally at an age where permanent damage is becoming apparent; my kidneys have been damaged (the current theory is that postural hypertension has caused the damage.) I think that the physical stress caused by long-term POTS does cause a more rapid "wear and tear" on the body.

[issie]

Firewatcher, That's my concern too. Since I have almost always too high blood pressure and know there is kidney function involvement with me - just wonder what the future holds.

As for looking at us with this that have had it long term. I asked the doctor about doing a study like that and/or also about families that seem to have genetic involvement. He didn't know of any studies being done like that, but said it was a good idea and someone should and I'd definitly qualify to be in the study. So, at least some doctors are thinking about it. We just need to put it more into their minds.

Issie

[lissy]

I have had this probally all my life started having many symptoms at age 18 was very functional (just dizzy,hot flashes when I stood or walked along time) anxiety like symptoms, had children and , not severe enough to be bedbound but pretty close.Gradually have had alot of improvements I would say I am 65%.

So I'd say when it began at 18 I was 90% good

At 29 I'd say 30%

and currently 65-70%.

The more active I am the healthier I become, along with avoiding stress, eating regularly.

Sorry I should also add I have always had pretty low blood pressure but just recently like this past month my blood pressure has stabalized....

[anna]

I have had symptoms of ANS dysfunction for as long as I can remember. I can recall near faints and grey/whiteouts from 6/7, always exercise intolerant, problems with the heat and cold. I had low BP well into my 30's then it changed to Bp swings that go very high so I have to take meds to lower my BP, I still have a host of odd symptoms!!!!

My 3 children have had symptoms since babyhood, my oldest is nearly 20 and still has a host of symptoms.

[Sarah4444]

I began having difficulties in my teens and am now in my early 40s. My impression is that I have an underlying HDCT like EDS as well as MCAS, and things along the way have bumped up the severity of my illness - an electric shock, virus, car accident, pregnancy... It's been a long downhill slide for me with POTS/MCAS becoming very evident and severe a couple of years ago.

[POTSMama]

I had my first "episode" of hyperadrenergia/POTS when I was 29, and I"m now 52. I don't recall any symptoms before I had flushing/sweating and tachycardia episodes when I was 29, and then over the years it would come and go, flare and subside. Until two months ago, it didn't change my life substantially and was manageable even without meds (I avoided medicating and went for Gatorade, extra sleep, avoiding triggers). Unfortunately a couple months ago I had an anaphylactic reaction to an antibiotic, developed severe MCAD symptoms seemingly overnight and that kept worsening and now I'm struggling but determined to eventually be able to manage this as well so that it doesn't stop me from living a full life and being there for my family/kids.

[MomtoGiuliana]

Officially diagnosed in 2003, but I have had mild symptoms going back to early 90's. Pregnancy in 2002 caused severe symptoms that improved a year later. Not been the same really since pregnancy, and I have relapses that can be severe. But overall I am pretty functional as long as I get enough sleep!

[Serbo]

this is a recent study, sample fairly large for PoTS. All "florid" PoTS patients, but tracked a good number over time, the longest from 1997, supports all other recent research that I have read which suggests improvements for most patients over time from initial on set. Almost a third of P's in that study were asymptomatic at follow up.

http://www.ncbi.nlm.nih.gov/pubmed/22190289

[issie]

Serbo,

It's nice that they have these sort of studies because it does give those hope - but, it's not true for all POTS patients. What people are writing here is their life story and experiences, this is what is true for us. Some of us will NOT recover - "EVER" completely. However, that being said - we do have times when we are highly functional - but other times where we are just as sick as the worst POTS patient. If you'd like to believe this study -and it helps you to cope - that's fine - but, don't be too disappointed if it's a life long journey with this illness. You have to be realistic and realize the possibilities of not having complete recovery.

Issie

[Serbo]

^ completely agree. i have EDS also along with Diabetes insipidus so expect it be a lifelong thing. For me it's a quality of life issue, but i am still completely expectant that with treatment (currently on no POTS meds), that I will see some improvement hopefully.

[Serbo]

Interestingly i have a cousin, similar age to me but female who also has EDS III and POTS but I understand she generally functions as normal. There are so many factors that seem to govern the severity of POTS, most of them not well understood.

[janiedelite]

I think this has been brought up before, but it's good to keep in mind that the population of dysautonomia patients who would regularly participate in a forum like this are most likely the more severely affected dysautonomia patients. There could be a larger group of more functional dysautonomia patients who would never feel that they had a need for the support provided on a forum like this.

[bellgirl]

I had a virus 13 years ago that misaligned my eye (blurred vision), and caused severe paresthesia and neuritis on my right side, pitted edema in my ankle. I was diagnosed with hypertension and hyperlipidemia then, and MS was ruled out, thinking that I had optic neuritis or ocular aneurysm. I few years later in 2003 I had a virus that caused my eustachian tube to malfunction, and had to have ear surgery. I also have had many strange nerve issues along the way. Then I coughed up blood, about I/4 of a cup for no apparent reason, after running with my dog, bronchitis (I think NOT) was my diagnosis in 2004. I have had asthma for 26 years, as well. Then I started having debilitating vertigo on several occasions in 2009, and was diagnosed with vestibular neurontitis or labrinthitis, and have been dizzy ever since with constant tinnitis. After almost wrecking my car, misjudging curbs, scraping the side of my car and the undercarriage, and having horrible abdomenal pain (Had colonoscopy), I prayed, and found an ENT in Birmingham to get tested for Meniere's, and other inner ear issues, and Dr. Pappas having done a thesis on Autonomic Vertigo, sent me to the Automomic Disorder/Mitral Valve Center of Alabama to Dr. Phillips, and the rest is history. I was diagnosed with Dysautonomia/Mitral Valve Prolapse/ Sleep Apnea last year in August. I have to say that I never thought I would be comfortable being on all these meds, but it has literally changed my life to have this treatment. I'm on Losartan, Hydrochlorothiazide, Bystolic, Clonazepam, Ambien (which I haven't filled yet), and Urogesic blue for spasms, and Albuterol, when I need it. I also sleep with a Cpap machine. I have good days and bad days, I don't work, but when I pace myself, and don't do too much on any given day, I am able to do most of what I enjoy, walk my dog, exercise at the gym (I push myself, but it helps), and have accepted my "new normal". Life is a gift, and I'm living it one day at a time. "Life is not measured by the number of breaths you take, but by the moments that take your breath away." Hilary Cooper

[Clairefmartin]

Ive had POTS since 18 october 2003 - I can remember the actual date! So that's just over 8 years. prognosis for me is that I improve mos defintaely and can function 2/3 of the time quite well but I relapse.

This is simiar to me - first episode was Dec 2002 (had major spinal surgery in 1999, haven't been the same since), then waxed and waned for many years and had one successful pregnancy. Successful carreer, fairly normal life, kind of just dealt with it. Actually joined DINET in 2006 in a flare up, then felt better and dropped off for 4 years. Then Dec 2010, second pregnancy and blood clots took me down completely, am now homebound and not able to be upright for more than a minute or two due to complete deconditioning. I really think that me staying so active for those years helped ward off the worst of POTS. I am on the hunt for answers now, never found out the cause of my POTS or other symptoms, but I have to cling to hope that I will get my life back in some form.

[persephone]

I've had POTS in some form since 1994 but wasn't diagnosed until January 2005. I still have it now. I also have EDS. It fluctuates though.