Searching member's list on DINET

[DSM3KIDZ]

I'm bored tonight and was just searching on this website and was looking under member's and there are alot of people listed but I don't remember seeing alot of them posting. What do you think happened to them? I wish they would pop in to let us know if they have recovered or something. I like hearing positive stories, it gives me hope. Well if any of you recover please post and let us know. I hope we all get that opportunity somday.

Bored tonight husbands working 24hr shift

Dayna

[Ernie]

Hi,

I think some of them are lurkers and others got better.

It would be nice to hear about people getting back to normal.

Ernie

[briarrose]

You might try sending them a quick email.

[MomtoGiuliana]

I wonder if there is any way a mass e-mail could be sent to all of these people, polling them on a few key questions--or would that be contrary to any agreement they signed on to when they registered to use DINET?

It would be interesting to know what has become of these people, if they are on meds for POTS, if they have improved/recovered to "X" level of function. There is not enough understood about these statistics--what percentage of patients recover (whatever that definition is). Not that this kind of survey would count as a scientific study, but it would still be interesting.

I would define myself as reasonably recovered, btw. As long as I stay on an SSRI I am highly functional--exercise, climb stairs, work, etc. I have minor symptoms like ectopic heartbeats, minor exercise intolerance on some days, tachycardia on standing, some other minor symptoms. My sister who is diagnosed with POTS is exactly the same--she was having problems that interfered with a normal life, but since she has been on an SSRI is highly functional--runs/exercises, etc.

Who knows what the future holds for us, of course. But for now, we are essentially recovered, I would say.

Katherine

[corina]

Katherine,

I'm really glad to hear you're doing so well!!! Like Dayna said: these stories give us hope! Enjoy your little girl Katherine!!!

Corina

[futurehope]

I'm in the category of "lurker". I check in here once in a while to see if anything's new. For me, I realized that thinking, talking and writing about something that is a part of my everyday life, well....... it wasn't serving any purpose anymore. When I was first diagnosed, it definitely helped me feel better to talk to others in my condition. But, after a while, once I came to terms with "this" and realized there were others in the same boat, I don't feel the need to keep thinking and talking about it. That is not to say I won't be here ever again. I'm just trying to focus elsewhere as much as possible.

I totally understand why others may use this forum more frequently and I'm not judging - just giving my thoughts.

[Michelle Sawicki]

Most of the people I've talked to that have "moved on" have gotten the information/support they needed and are now focusing their thoughts and energy elsewhere.

Take care,

Michelle

[teacherdiva]

I admit it, I lurk too! I have to say that I haven't posted, because my story seems to pale in comparison to some of the challenges that many of you face. I use this site for information, and I am constantly checking for medical updates.

My POTS is mostly under control, but yet I am not symptom free. I have been able to control my POTS with diet and exersize changes, and I have even been off medication for close to 4 years now. I was diagnosed after finding myself flat on the pool deck and on the floor of the dorm bathroom in college! (I wanted to smack every doctor that asked me if I stopped eating or drinking fluid). I work full time as a teacher where I am on my feet all day. I would say that the time I spent with POTS symptoms was the absolute WORST pain, exhaustion, experience of my life.

I admire the courage you all have, and applaud you for having the courage to tell your stories.

Kristi

[Kimberley]

Hello everyone. I know I dissapeared for a while. I helped my Mom out who was the primary caregiver for my Grandmother who had Alzheimers. Between that and working 3 jobs and Moving I just had no time. My Grandmother just recently passed away. As for headaches, Dizzy, neausea, weak, Massive Tingles on my scalp. This Pots is really bad for me. I still keep pushing myself. I get this attitude that I refuse to believe I am that sick!!!! It is awful. I'm a wedding DJ, I have an ebay business, and I work part time at a Womens Cothing store at the mall. There does not seem to be time for everything I like to do. I see a Neurologist Dr. Stillman. He even gave me Botox. It helped alot but I can really feel the extreme difference Months later when the Botox is wearing off. Dr. Stillman tells me that I need to understand this will be a Lifestyle change for me. It is very hard for me to get this through my head. I'm sick most days. VERY SICK. I still push. Is there anyone out there who is like me?

[futurehope]

Kimberley, I'm like you. I push myself every day. I consider it a blessing when I manage to "get through" everyday normal activities that able-bodied people do not even think about. I've learned to appreciate all the help the Lord gives me through everything I do. I am not one to roll over and give up, so I suffer a lot. I've also learned to not complain as much as I used to before I had a diagnosis since it does not help me feel better and nobody understands what I'm saying anyway. What does it mean to "feel sick" anyway, and who can do anything about it? You know what I mean?