the cycle

[janineerrn]

Ive had this diagnosis for about 2 years or more now. It looks like from the posts in here that there is a cycle to the acceptance and progression of POTS. This is my observation.

We have POTS, (some with gradual onet over the years, some with sudden) we are worked up for everything, medically cuz we ourselves as well as medical professionals have never heard of POTS.

We become fustrated because we can not control our symptoms but obviosly are not "medically" ill because a lot of our tests are normal and the abnormal ones make no sense for our symptoms.

We are told to get psych help. What else could we be but mentally ill.

We begin to get tired, from the doctors, from all the medicines all these docs want us to try, from trying to keep up with our normal active busy lives.

Fatigue sets in, maybe because our hearts are working double time to keep us going at a usual pace.

Yet we keep going, and pass out at work or in Walmart and are carted off to the ER to again be told we are nuts.

Work becomes harder and harder, the house is a mess. the kids are getting out of control, everything is piling up...overwhelming.

CRASH>>>> at the 1 year point

Specialists, finding out about POTS, depression, accepting our condition, anger, family issues, work issues, disability, insurance, fighting to keep it together. Giant juggling act to keep life as it was. Have just enough meds and strength left to carry out this act for a while longer.

Crash>>>> 2 year point. medical bills, loss of insurance, fighting for disability money, ready to open a can of whoop azz on some doctors but all you can mange to do is lay in bed and cry.

What happens next?

Janine

I am in a great mood tonight, can ya tell?

[dizzygirl]

What happens next next?? You still wanna "OPEN A can OF WHOOP AZZ ON SOME NIT-WITTY DR.'S!!----that is if you can stand to do the whooping!

I have had symptoms of pots for 24 yrs. and the past 4 yrs or so have been the worst.. the past 10 months the most absolute worst..i dont know what comes next.. only that i'm not sure that I want to know!

I can totaly relate and feel for everything you have just said in your post.. and wish that I had something more to offer..but I have lots of cyber HUGS for you!!

HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG HUG!!!!

[Poohbear]

I can SOOOOO relate to your post!!!!!!

Start to look for a balance between fighting all the things we are forced to fight for, keeping up with Dr's, testing etc. and try to find some hobby and joy in our daily lives so we don't truly go crazy

In between allow yourself to grieve and have your crying days and be gently with youself....that's all part of this process too.

That's where you go from here....do your best to juggle it all.

I'm currently reading a book that was recommended by someone on this board and I'm only in Chapter 4 but so far I have found the book helpful. You may want to look into it too; I got mine from the library.

It is A Delicate Balance--Living Successfully with Chronic Illness written by Susan Milstrey Wells

[Jacquie802]

Hey,

I don't have a specific answer for you, but my personal answer is that we keep FIGHTING...we fight the disability until they approve us, we fight our doctors until they help us (or help us the best they can), and most importantly we DON'T GIVE UP HOPE. Really, what else is there if we give up hope?

Jacquie

[janineerrn]

Thanks for the hugs and replies.

I havent given up... I have just had every test imaginable so I give up hope for a cure in my lifetime.

I have hope for my life. I am trying to find things that will improve my condition through trial and error.

I just noticed that pattern through out the posts here, sort of a timeline. I think the stress of doctors, misdiagnoisis, insurance, disability issues etc... make us sicker. Justwondering what the condition of the people who keep fighting with the medical and disability system is vs the condition of people who said f the system.

I think stress reduction is a major key to feeling better.

Peace

Janine

[dawn]

Well written post.

We cry, we struggle, we want to give up. Then we get up and continue to fight.

I know I'm not crazy and that is all that matters.

Dawn

[Guest CyberPixie]

I know it's not really funny but You cheered me up after a bad night.

For me I'm just about getting to year 2 (though I've obviously had POTS mild most of my life, it suddenly took hold over the space of 2wks last year).

Still fighting Dr's, fighting for my disablity benefit to be raised up to a higher level, still stuck in bed hardly ablet o do anything.

However, call me crazy but I'm just about to start up an online business from the (I was going to say comfort but it's so hard it isnt) non comfort of my bed. In one way, I'm too ill to do it but if I dont have something, I'm going to go insane! It's a kind of coping mechinisim (sp?) of trying to ignore POTS and get on with my dream. Apparently life still has to go on even though we're seriously ill. Never mind one day at at time, I'm doing this one second at a time.

No advice but thanks for cheering me up a little.

[Poohbear]

I just wanted to add in response to your comment "Just wondering what the condition of the people who keep fighting with the medical and disability system is vs the condition of people who said f the system.

I think stress reduction is a major key to feeling better."

I would give ANYTHING to be able to drop the stress of fighting with the "system" and my Long term disability carrier. I must say Social Security for me has been little stress when compared to the cr*p my LTD carrier has put me through!!! I do think I would be some better if I didn't have the continual stress and strain the LTD carrier puts on me. Unfortunately, I have no other sources of income and I'm not able to work at all right now so I do feel trapped into having to fight them. Yes, my energy goes to fighting them instead of devoting my focus and energy on getting better. That's not to say I don't spend any energy trying to get better, because I do, but it is to say I would have much more energy to put toward my health if I didn't have to fight for every little thing.

[Gracefulprincess]

wow you summed up things pretty good! I think we all can relate to it.

For me it's been 3 yrs since the POTS started and 2 yrs since i've was diagnoised. So what happens to next.. I'm still going to keep fighting even though there are plenty of times that i don't have the strength to fight.. i can't give up. And in the meantime i'm trying to enjoy life the best i can.

[janineerrn]

I honestly believe that the system makes us sicker. FYI for all those that have UNUM Provident LTD... They lost a suit against them for a POTS patient they denied. When I brought that to thier attention things got a little easier and they definatley stopped giving me a hard time. Ill see if I can find that link again. I printed it and faxed it to them. the key with LTD companies is that if you want anything in your record all you have to do is fax it to them and it is automatically scanned into your file. It can be a major plus. I faxed in all the info on POTS I could find as well as the article on the law suit they lost. But becareful what you fax them, you dont want anything in your file that may hurt your case.

Peace

Janine

I paid LTD insurance premiums for years, now when I need it I have to fight to get it. What a bunch of poop! Do they think I want to sit home and do nothing? I would love to go back to work and play with my grandbabies and have my horses back. Isnt anyone concerned with the quality of our lives with this disorder?

[Wufflebear]

I can relate too. I have had this since age 3 or 4 and I am 33 now! For sooooo long docs said it was in my head etc.... Just cause they could not think of the right test to run that would show the problem. Failure of imagination on their part.

I dont know what is next in this 'walking the tightrope' thing of ours but... Just know that the one who is lacking is them. You are right, they are wrong. Have patience with yourself. Sometimes we are our own best doctor.

[Guest Julia59]

I completely understand Janine-----and what a cycle it has been for so many of us.

I worry about all of you who live alone, and have to rely on your disability because there is no other income.

With your personal disability from your emplyer---you have to proove your not nuts---and the same goes with doctors, but yet you can be approved for benefits by SSDI if YOU ARE NUTS. Personally, I never looked into weather or not my employer had disability insurance because I made my general manager sign a pick slip saying I was laid off.

They tried to get rid of me due to illness by demoting me to my old job in accts. receivable which was actually more stressful then my job as office mgr---and for a lot less money. I received unemployment, as I was not yet diagnosed with anything----just very sick, and it was not stated that I could not work yet. The unemployment ran out in 6 months---then a 3 month extension. It ran out in 2002.

So many people have to go through this alone, and no one close by to lean on in times of crisis. If my husband left me today I would be screwed. I don't really have any other REAL HONEST support other then him. And of course I have all you wonderful people. But you know what I mean----when someone is not close by who believes this stuff---a physical being to lean on, it has to be pretty rough.

We just have times where we feel like giving up---but we never do, we just keep plugging along and taking it up the hoo-ha from doctors, friends, family, and the disability systems. This on top of feeling like we have the worst flu ever, on top of disabling pain and fatigue, as our hearts race even though were too wiped out to take it.

We are warriors on top of suffering from dysautonomia and other health problems related to it.

All this while Doctors deem us as crazy----it's all in our minds---every bit of it. Some of us have even given in and agreed with them just to get some peace. Very sad. But this only lets us fuel up to fight once again and stand up to those Docs---as I had the pleasure of doing once. It felt so good, and empowering.

Just conserve your fuel when you can---take a rest, and then begin the fight again.

Julie :0)

[morgan617]

I used to be such a fighter.

Now I get through one day at a time, choose my stressors very carefully. I do not have the energy to fight any more. I have fought my whole life and I am tired.

I do not fight for tests, for a correct diagnoses, for appointments, for people to believe me. They can believe what ever they want and they will till I'm in my grave. My marker will say "I told you I was sick"

Only then will it be tangible to the jerks and sps'ers.

I am not fighting for a chair.

I fight for my family, for my beliefs, for my soul somedays, because somedays I think I'd sell it for one really fantastic day.

Pick and choose, don't sweat the stuff you can't do anything about, love your family despite how they feel about this, one day at a time.

[MomtoGiuliana]

The strange thing is that if you read the typical POTS literature out there, and talk to doctors, the conventional wisdom seems to be that POTS symptoms improve for most people over time. This is what my POTS specialist has said to me several times. He said he only has a few patients who continue to do poorly despite trying every conceivable treatment regime. He said that most of those people have some kind of cervical (neck/brainstem) problem causing the POTS--and there is not yet an effective treatment for them. He has also said that many people with POTS do feel best if they remain on their treatment regime for many years. I know (from experience!) that if I stopped my SSRI, I would have far worse POTS symptoms.

Katherine

[yogini]

Hi Janine,

I've been on the board for about 1 1/2 years and at first I felt like there are a lot of people with pretty serious POTS here (and there certainly are). But over time I have realized that there are also a lot of people who are able to work, travel, go to school and do lots of other things. There is even one woman who runs marathons. I think some of the people who are more active don't post as frequently.

I am not saying that all of us can do these things, and but at least some can, even if we sometimes struggle to do so. I think we are all different and the fact that at least some of us can be active has given me hope, and encouraged me to keep looking to improve. I can certainly do a lot more now than when I first got POTS.

-Rita

[appleby]

God, reading all of these posts and hearing all of the pain and hut, it breaks my heart. I have had hyperadrenal POTS for some 30+ years, and I have been down there with all of you. After all of these years trying to get help I learned that you have to read the literature yourself, decide what tests you want done, find out as much as you can about which of your autonomic systems are out of whack; and then find a doctor who will let you try the various medications you think might help. Because the wizard of OZ doesn't have anything in his bag for us, we have to find it ourselves.

Personally, I am a lot better then I was 30 years ago (I do not have the progressive form), however I had to wait 30 years, and a lot of it is the medications I now take.

Good luck everyone and keep fighting, and searching for better treatments.

[JenniferInOhio]

I've been on the board for about 1 1/2 years and at first I felt like there are a lot of people with pretty serious POTS here (and there certainly are). But over time I have realized that there are also a lot of people who are able to work, travel, go to school and do lots of other things. There is even one woman who runs marathons. I think some of the people who are more active don't post as frequently.

I am not saying that all of us can do these things, and but at least some can, even if we sometimes struggle to do so. I think we are all different and the fact that at least some of us can be active has given me hope, and encouraged me to keep looking to improve. I can certainly do a lot more now than when I first got POTS.

I'm like Rita. I was diagnosed this summer, but had POTS maybe 1-2 years before. When I first started coming to this board, I was very depressed because it did seem like there were a lot of people with serious POTS. I, too, have realized that maybe the more active people don't post as often. I still lurk here and my heart goes out to the many people on this board who are having such a hard time. I just keep praying to God to help me and thanking Him that I function as well as I do.

I function pretty well except for 20 minutes after I get up in the morning (I take my medicine, drink a big glass of water and wait for my body to get used to being upright), on days where it's hot and humid, and during my period my tachycardia is a little worse. This summer I was worried that I wouldn't be able to do anything or go anywhere. I go to the mall, go grocery shopping, attend worship services, play with my kids and even went to Disney World a couple of months ago and walked around the parks all day. I do pretty much whatever I want to do. I just make sure I take a gatoraide with me! Don't be discouraged. We are here for support.

[HoldOnToHope]

I have to say it is refreshing to hear from folks who are doing a bit better and maybe have a milder form of POTS. It feels hopeful. Let's make a point of sharing those stories more often.

Along those same lines....I have a question for those of you who have seen improvement in your condition....was it gradual? sudden?

Did you wake up one morning and notice you were feeling better? Did you realize you were better because you had longer periods of time between "crashes"?

Do you know if you are physically healthier and POTS symptoms are diminishing OR are you better because you are now taking the right meds OR are you finally learning to pace yourself/cope better?

Thanks!

[JenniferInOhio]

Did you wake up one morning and notice you were feeling better? Did you realize you were better because you had longer periods of time between "crashes"?

It didn't really work that way for me. For the past year or so I kept going to doctors complaining of shortness of breath, chest pain and palpitations. My doctor wanted me to see a therapist. I think she thought I was a hypochondriac. I was functioning pretty normally, but the symptoms were scaring me (I kept thinking I was going to have a heart attack ~ I'm 31).

Fast forward a few months...I had a diagnostic laparoscopy because of endometriosis and after the surgery I kept having the surges everyone talks about getting on this board. They kept coming in waves and my heart rate was soaring. Doctors had no idea what was wrong and after a 2 day hospital stay and several weeks, I was diagnosed with POTS.

Now, looking back at all of those symptoms I had before, I had a mild form of POTS before the surgery. I think the surgery meds made me go into what I would say a moderate form of POTS. After a few weeks and being put on nadolol, I had settled back into what I was before the surgery ~ actually, somewhat better. The nadolol has taken away the chest pain and palpitations are minimal. I don't seem to get the shortness of breath anymore (just when going up too many stair too quickly).

Do you know if you are physically healthier and POTS symptoms are diminishing OR are you better because you are now taking the right meds OR are you finally learning to pace yourself/cope better?

A little bit of both. My POTS symptoms are better because of the nadolol, but I also know what is going on with myself now, so I make sure that I drink plenty of fluids, take the elevator instead of the stairs, stay in air conditioning when it gets too hot out.

Hope this helps and encourages you.