Average Prognosis For Improvement? Meds Or No Meds?

[brethor9]

Hi All

Just curious?? I have been battling this illness for almost 4 years now and was just recently diagnosed in late May. At my first appointment the specialist said I was looking at atleast 1 year of treatment. We are now into Sept and even on medication I am not seeing much improvement. I am just wondering how many of you were given a time frame for improvement? what was the time frame? Have you improved as expected? Have you surpassed the expected time frame for improvement and gotten worse or stayed the same? How Long?

I am just trying to get a sense of realistically how long most people are struggling until they see some kind of stabalization in their symptoms.

Thanks everyone!!

Bren

[WyomingGal]

I have had POTS for about 2 1/2 years. I saw a doctor at Mayo in February who said he expected me to be off my meds by August. It's now September, and I do not think I could function without them. It probably also doesn't help that the summer heat was hard on me this year. I think one of the main reasons it is taking longer is that there are other factors going on that need time to be addressed and supported, such as Epstein Barr virus, and now I am eagerly awaiting my appointment for next week with the endocrinologist, since I know I have nodules on my thyroid and the nurse told me I have a high TSH. I still have hope that I will get back to some sort of 'normal', but it is just going to take some time.

Have you and your doctor messed around with your medications at all, maybe there is another combination that would work better for you? Have you noticed any improvement, even a small amount over time? Also, I have found that compression stockings can completely change my life (even though I don't wear them in the summer). Exercise I know is important, too, if possible. This spring got lazy and overconfident on my salt intake, thinking I had things under control and realized I was getting about half of what was recommended for me, so I am trying to be more diligent about that each day.

[samannran]

I've been battling dysautonomia for eight years now. I wasn't given a prognosis about getting better or worse. Since being diagnosed, other organs have been affected. I now have pure autonomic failure, and I can only eat soft foods because of gastroparesis. I know some people do recover, & my neurologist told me it's rare for people to develop PAF. Unfortunately, I was one of the few. I hope you have a full recovery. 

[MomtoGiuliana]

My specialist says it takes an average of 4 yrs to recover--although I think many do not completely recover--most improve enough to live a fairly normal life--according to the limited literature anyway. You may need to try different meds or combinations to feel your best. And/or it may just take time. I was very sick for about 8 months. After diagnosis and treatment I saw slow but pretty steady improvement in a matter of months. However I also have relapses.

[jennyg97]

Wow! This gives me a lot of hope. I had never heard of the possibility of recovery. I was first diagnosed 12 years ago and have had many ups and downs in my condition. Right now, I'm in a pretty severe down. But even in the "ups" I've never been off meds and no one's ever raised the possibility. What kind of drs are you seeing that are giving this kind of prognosis? Are they specialists in the field?

[lissy]

I want to say this simply:

I think I had POTS or (some form of dysauto) since I was young.

I hit the worse time after my last child 3 1/2 years ago, I seen a specialist and was told Meds for 6 months should send me into recovery, I have not taken any meds* I sound crazy right...

My normal functioning day is wake up between 8-9 get 3 kids ready for school bathing, ironing, feeding, take them to school most of the time I'm a passenger.

Then I may go to the store/errands, struggling but walking (no scooter) then pick the kids up come home prepare dinner, do homework, maybe dishes or household stuff.

And last I watch T.V until about 12-1 and crash to sleep.

This is my schedule now without any meds.

But 3 1/2 years ago I struggled to even stand to wash the dishes( I used a elevating PC chair) I avoided the weather changes ( could never go out in 80 degrees) had to use a scooter in the stores.I have had 3 garage sales this summer and even got a tan. And I have sat in a car w/ no air on 100 degree days with a bag of ice on the back on my neck, but survived.I thought I would die!

The only thing I can say is I still feel pretty awful, but I stay active and it has seemed to help over time. The only med I am considering is the SSRI all the others require so much balancing. I think recovery is possible with and without meds I think it matters how severe you are and if you know the cause.

And I thank GOD I have seen improvement and I believe its all his will.

Lissy