Will We Ever Get Better?

[mancmm19]

Hi everyone,

I hope that you had a great weekend!! I just want to know if anyone has a positive story since their diagnosis. This past weekend, although I've been sick for almost 3 years now, I was looking back on all of the things that I could've done a year ago that I can no longer do. I didn't even realize that I was deteriorating until I thought about it. I had to leave church early on Easter Sunday because the sitting/standing routine was just too much at 11 am!! (Unfortunately church is NOT conducive to POTS! And too make it better- I needed to sit down while everyone else was standing and an eldery man next to me proclaimed loudly "You better stand up young lady or else you won't get any holy water!! JUST WHAT I NEEDED as if everyone around me didn't notice I was the only one sitting down!)

Anyway, I'm starting to get very scared when I think about the future. I am 22 and have big plans for my life...and I am absolutely petrified that I will love this way, if not worse, forever. We only have one life to live and I don't want to spend mine like this for one more day!!! I am thinking about quitting my job and turning my priority to exercisif everyday, hoping that will make a difference. I want to stop this downhill pattern before it continues any further.

My question to you all is, have any of you gotten better, even a little bit? If so, what helped you? Also, has any ever heard of a full if not mostly full recovery from POTS? This negative attitude I'm having is really ruining a lot of the day and I NEED some hope. Please share if you have some!

Thanks as always,

Michele

[firewatcher]

Hi everyone,

I hope that you had a great weekend!! I just want to know if anyone has a positive story since their diagnosis. This past weekend, although I've been sick for almost 3 years now, I was looking back on all of the things that I could've done a year ago that I can no longer do. I didn't even realize that I was deteriorating until I thought about it. I had to leave church early on Easter Sunday because the sitting/standing routine was just too much at 11 am!! (Unfortunately church is NOT conducive to POTS! And too make it better- I needed to sit down while everyone else was standing and an eldery man next to me proclaimed loudly "You better stand up young lady or else you won't get any holy water!! JUST WHAT I NEEDED as if everyone around me didn't notice I was the only one sitting down!)

Anyway, I'm starting to get very scared when I think about the future. I am 22 and have big plans for my life...and I am absolutely petrified that I will love this way, if not worse, forever. We only have one life to live and I don't want to spend mine like this for one more day!!! I am thinking about quitting my job and turning my priority to exercisif everyday, hoping that will make a difference. I want to stop this downhill pattern before it continues any further.

My question to you all is, have any of you gotten better, even a little bit? If so, what helped you? Also, has any ever heard of a full if not mostly full recovery from POTS? This negative attitude I'm having is really ruining a lot of the day and I NEED some hope. Please share if you have some!

Thanks as always,

Michele

Michele,

I have had POTS all my life. Until I found the right meds I never knew what it was like to stand up and NOT have my heart jump and pound. I always thought I was "out of shape" and that the rest of my symptoms were "normal." My doctor at the time, even told me that they were! I have gotten better. I currently feel better than I have in six years. I also know that it can and will change in less than a day (like Wednesday afternoon after Pilates/physical therapy. ) Some days are good, some are not. But KNOWING what is wrong, and understanding that my energy is finite (a limited source) has also helped me to cope by planning for the crashes, knowing my triggers and not pushing too hard. Some of us can run a mile, I know I never will. But there will probably never be a need for me to do that. I have heard of almost full recoveries from POTS of viral origins. There are a few studies about it. Certain conditioning and behavior modifications help. You've got a double-whammy, sweetie, it will take a while just to get over Lyme's by itself. There is hope, because I choose to have it. That is also a choice you must make. It does not mean that hoping for a cure is denying your illness though. Grieve, accept and plan, you could have just as easily been bit by a black widow spider instead of a tick and lost your leg! None of us is guaranteed tomorrow, learn to live as best you can for today and accept your limitations. You will be much happier.

Peace and health to you!

[Miriam Poorman-Knox]

Michele,

BREATHE, BREATHE...

This is so overwhelming. This diagnosis, all the "information" that we "eat" and breathe day and night. First in church sit in a space that is nomally empty if you feel that uncomfortable. I have always had people no visable reason, need to sit. Remember whose house it is.

I do know people go into remission. Your life will be different. Folks with diabetes, parkinsons,arthritis, ....... Perhaps you would want to cut down on your work hours to include exercise. I would think long and hard about giving up my job. That said you may need to. I would not do that with out counsel. This is big and I think important to have someone to bounce it off.

My dog is demanding attention. Hope this helps....Miriam

[futurehope]

Hi everyone,

I hope that you had a great weekend!! I just want to know if anyone has a positive story since their diagnosis. This past weekend, although I've been sick for almost 3 years now, I was looking back on all of the things that I could've done a year ago that I can no longer do. I didn't even realize that I was deteriorating until I thought about it. I had to leave church early on Easter Sunday because the sitting/standing routine was just too much at 11 am!! (Unfortunately church is NOT conducive to POTS! And too make it better- I needed to sit down while everyone else was standing and an eldery man next to me proclaimed loudly "You better stand up young lady or else you won't get any holy water!! JUST WHAT I NEEDED as if everyone around me didn't notice I was the only one sitting down!)

Anyway, I'm starting to get very scared when I think about the future. I am 22 and have big plans for my life...and I am absolutely petrified that I will love this way, if not worse, forever. We only have one life to live and I don't want to spend mine like this for one more day!!! I am thinking about quitting my job and turning my priority to exercisif everyday, hoping that will make a difference. I want to stop this downhill pattern before it continues any further.

My question to you all is, have any of you gotten better, even a little bit? If so, what helped you? Also, has any ever heard of a full if not mostly full recovery from POTS? This negative attitude I'm having is really ruining a lot of the day and I NEED some hope. Please share if you have some!

Thanks as always,

Michele

Firstly, sit somewhere in church where you will not be as conspicuous if you remain seated. I'm always in the back. Many times I remain seated, sometimes I get up. It depends how I'm doing. Ignore the elderly man, unless you feel like saying "I am not feeling good."

Secondly, we're all different and you will have to decide based on your symptoms and what you are capable of doing, how you will proceed from here on out.

Truth be told, on this forum, other than the above post, I haven't heard many people on here come back and say they are better or cured. Maybe, once they're better, we don't hear from them.

It is difficult to hold a job and have a life with this ailment, but it has been done. You have to choose what is important to you and live your life that way.

[janiedelite]

Hi Michele,

Firewatcher already said it so well. I can relate to the experiences in church, though. My hubby and I always pick an area in the back and towards an aisle (so I can lay down during the service and not attract attention, and so we can leave if needed). We didn't go to church this weekend because we knew it would be crowded. We had lunch with my parents and grandparents instead, though.

I hope you find some better treatments for your symptoms. I've also had POTS for about 3 years now, although the worst of it hit about a year ago. I remember what it was like to have unlimited energy. I definitely have grieved as I realized what I couldn't do anymore (especially work as an RN). But like Firewatcher, I try to choose each day to enjoy what I can do, such as looking at the spring flowers I planted a couple weekends ago, having lunch with family, talking on the phone with friends. Try to make some plans for the future whether it's taking an on-line class, or working on a home-made mother's day present. Accomplishing little goals will help you focus on what you can still do and not so much on your limitations.

I've been told by the Mayo doc that I could get better, but my mom also has idiopathic neuropathy and she's 60. My husband has more hope than I do that I'll recover from POTS, but I just try to take it one day at a time and as Firewatcher said, choose hope.

[mkoven]

It does get better or it can get better. Of course, we are all different, with different causes for our symptoms, so different treatments, and different prognoses. In my case, I've had pretty consistent improvement since last summer, with better diagnostic testing, better meds, and a better understanding of the problem. That doesn't mean I'm "normal," but there are days when I'm much more bothered by other things--either health or non-health. The huge thing for me was finding knowledgeable, responsive doctors (both are important!). Before that, I was a wreck. It's unfortunate that so few docs know about dysautonomia or how to treat it.

I have done better with a combo of compression, cardiac rehab, florinef, and midodrine. Till I got to see good docs, no one wanted to put me on meds, because they didn't have experience with midodrine and florinef, and it sounded so bizarre to them to deliberately raise someone's bp--esp. since I'm "middle aged " (42) and overweight (on the chubby side). I was also scared. But once I saw docs with tons of experience prescribing these, I could be reassured. I started with teeny doses. For me, florinef really made a huge difference.

But if you don't already have a knowledgeable doctor that you can work with, I would say that's the first order of business, even if you have to travel.

[icesktr189]

This is one of my biggest fears that i will keep getting worse and worse.. but you have to accept that you have limited control and i see that you believe in God and realize its all in his hands. That helps me out a lot by knowing someone of higher power than me has control The main part that gives me hope is that when i first got POTS i was bed bound for 5 months. Now i have a part time job and can still see my friends when i feel up to it. Just take it one day at a time. I know I cant look into what i will be like in 2 years because it scares me. No matter how bad you get at least you are still alive i hope you get better and try to think positive! *hugs*

[lizb]

Hi Michelle, it is so easy when you have POTS to get the "poor me" syndrome. Six years ago I was working full time, went out dancing every weekend- I love dancing... looked after my grandchildren and more or less had a very active lifestyle. Then WHAM POTS struck I had all the symptoms as everyone else - in and out of hospital it was like a revolving door at times I thought why me? This rollercoster of symptoms went on for three years until I was finally DX in August 2006. I was prescribed Flornif and over the past three years I have steadly got better. This gave me hope that things may get a lot better, little by little a day at atime, but I had to be patient. I was able to work full time, go dancing, albeit not as often, but I can dance. But the main thing I did was I stopped feeling sorry for myself and accepted that for me it could have been worse!!! I refused to let POTS control my life and enjoyed my good days and coped with my bad days. Today I have more good days then bad so that's a plus. This is MY experience and I hope you get the strength to face your fear of the terrible condition, especially as you are so young - try and take one day at a time and have the hope that one day it may get better.

Take care

Liz B

[MomtoGiuliana]

It is very possible to improve. I think people who are less sick don't come to DINET--why would they?

I live a normal life with few limitations. I haven't had more children b/c I was so sick with POTS with the first pregnancy. But I can work full time and pacing myself and getting rest, can function pretty much like a normal person 90%+ of the time.

My younger sister also has POTS. After a difficult initial bout in her 20's and still on treatment she also is very well. She had a difficult pregnancy and lost her baby (maybe or maybe not POTS-related). She is training to do a traithlon this fall and is back to work full time.

[Broken_Shell]

Hi Michele,

HUGS, HUGS, HUGS, & MORE HUGS

I know that you know my story, so I am sorry that I can't offer you any hope in that regard.

However, I understand about church and having older people misjudge you because they assume that because you are young, then you must be healthy, so they give you that "today's youth" look.

I also can no longer participate in the normal standing and sitting pattern of mass at church. When I don't feel well enough to go to church, then I watch a televised mass on Sunday mornings. Otherwise, if I can go to mass, I always go to the Saturday service at 4:00 pm since my symptoms are so bad in the mornings, and I sit off to the side or in the back so as not to draw attention to myself. I also have to check my blood sugar and eat in church often because of my hypoglycemia, so I just try to be as conspicuous as possible.

About a year ago I had an experience that really made me feel bad. I was sitting in a wheelchair at the entrance to the doctor's office waiting for my ride to pick me up after an appointment. An elderly man and his wife came to the door, and loud enough so that I could hear, the man said to his wife, "Young people are so lazy and disrespectful today. That girl just sat there in that wheelchair watching us instead of getting up and opening the door when she saw us coming." I was absolutely floored, and I felt bad because I know that a lot of people pass judgement without knowing what is going on with someone. I feel the same way when I am out with my mom in the store and she is helping me and getting things for me while I just sit in a chair and people look at us with an obvious look of disapproval.

One of my preceptors in pharmacy school had a saying that I thought was really good. She'd say.... "to assume is to make an *** out of u and me."

Hang in there! Send me a PM if you want. I may be woozy, but my ears and shoulders... ok more like eyes.... are working... I think!

~ Broken_Shell

[tinkerbella]

Good Evening,

I've had flares for years not ever really knowing what was really wrong with me till about 1 1/2 years ago. Now, I'm sad as right now I'm living alone. Had to give up my bedroom upstairs, living in a porch downstairs. I had to break it off with the man I loved for the past 7 years cause he left me in an ER when they thought I had blood clots in my lungs. He left to go get drunk and I was all alone. Hello! Goodbye..... Have a house and can't afford to do any work to it right now. I see myself losing control of my body more and more each month. I often think I'm trapped in someone's else's body like my mom's who is 89. I'm blessed with wonderful caretakers, have children, and two grand babies who all I adore. Sadly, I lack family support, they all can't see what is really wrong with me and it hurts almost as much as the physical pain I live in. I walk with a crutch now, sick of falling.

my granddaughter when she was 3 started acting out my illness as no one would talk about it. She started to pretend passing out everywhere, she started to want salt water so her mom made her the saltiest glassful so she would hate it and she took a sip and said she loved it. When she plays Dr. she puts on heart monitors and knows that some blink all night long, and she's even rubbed salt into my skin thinking it would save me.

In her tiny 3 year old voice she asked me, "Nannie are you going to die?" "Nannie, if you are I'm going to I'm going to miss you so very much cause I love you so very much Nannie, I really do." She amazes me, that she can tap right into my soul and knows that I need my family to talk about what is wrong so she acts it out to get there attention. Still no one talks.

I try to make everything that happens to me fun or a joke. The hospital is the Spa and where I get the best treatment and have my support. You won't find my family there. Never, nada, no way! What's all this about I'm sure your thinking? It's about love, we need love and support to help us get better. Without it I think that's when we start to crumble and fall apart more and more.

Like a newborn baby if left alone can die from lack of touch from it's mother. The same is true for us, sadly many of us can't meet anyone anymore being house bond. But we crave human touch, support and unconditional love. I believe those you us who have that get somewhat better and those who are alone and who have many other illness along with their Dysautonomia. Like holding onto an helium filled balloon and letting go that is what happens. Sadly many of of us become helium balloons and when the burden is too much for others to bear the family just lets go and we float away and flare...

The lucky ones have a good family support or make a new family out there through support groups. hospitals, faith in your higher power and friends but we can't get better with out love and support! Doing everything alone is tiring it's self, I need a full time sectary just to keep all the insurance stuff straight. Well I just used up all my energy for the day. I hope this makes sense to all of you.

[mrsdavidson8605]

HI there,

I'll give you a gentle hug and tell you that I know how you feel LITERALLY! I think the battle you described within yourself is just what everyone with POTS goes through, no matter what the degree. Personally, I have gotten worse in the past 2 years. But it's crazy because I will have bad flare ups then feel much better the next day. I can go several weeks feeling horrible and then feel good for a few days to a week. It is really mentally draining... I know how you feel about church. I started sitting down during the service for the same reasons (standing and trying to sing, then sitting, standing etc! WOW!!) People look but you know what, I got tired of worrying about what people thought (most have already made their assumption about my illness a long time before now) and I just focus on being there and worshiping God. For me, that is where I draw my strength. I hope something that has been said will give you peace. Just take it one day at a time. If that is too much, take it a minute at a time

[ramakentesh]

I would have sworn I replied to this thread before - but i couldnt find it...

Im very confident that we will get better.

My symptoms improve in between boutes but my POTS was a gradual onset type that arrived in my mid 20s although I can trace symptoms to my teens like many people here.

The research that is going on about POTS is pretty massive - its a big area. The only problem is that different doctors seemed to be pretty convinced they are 100% right on their particular theories and then tend to use selective references that agree with them in their own studies to justify their arguments.

Im hoping that maybe by my 40th birthday I will have a treatment that is far more effective than the current ones that havent really been very helpful for me.