1/3 - 1/3 - 1/3

[KellyErnst]

Nurses at Dr's office have indicated that 1/3 of POTS patients get over their symptoms and they never reoccur 1/3 symptoms get better and 1/3 seem to stay the same or get worse. Would like to know if any one agrees with this. I am hoping and praying and trying to stay positive that I will be the 1/3 the gets over POTS just don't know how long this will take.

My symptoms are fatigue, brain fog and internal thermostat broke.

Taking lots of fluid, salt, B-12, copper, levsin, lopressor and remeron.

[futurehope]

I really don't know how they could come up with any numbers unless they actually did a study.

Maybe in that particular practice, they've kept notes.

Anyhow, I certainly want you to be in the "1/3" that gets better. Wishing you the best.

[Lukkychrm42]

I don't know about the exactness of the numbers, but it really wouldn't surprise me all that much.

To my mind, though, the diagnosis simply hasn't been around long enough for them to have a super clear-cut idea, so the classes to have graduated from POTS either completely or mostly, were *probably* on the developmental or post-viral side, and if you've got it from something else, in some cases, they probably just don't know what to expect, except to keep up hope that if at the moment there's no medicine that helps, then soon there will be.

That's just my 2 cents... maybe 3.

Take care and best wishes!

[Jersey Girl]

I too hope that you will completely get over your symptoms, but there are varying interpretations of what definitions physicians use when they say someone has recovered from these types of illnesses. Many of us experience improvement, but getting back to the old "normal" is another question. Martha

[Sophia3]

I never heard the 1/3 rule. But I was told by some ANS experts in the field on the phone and in person, that about 80% of the pts have the sudden onset version of POTS or ANS dysfunction and have better chance of recovery. ESPECIALLY if dx in the first couple years.

Those of us in the 20% who have basically had this ALL OUR LIVES rarely get better and sometimes get worse. After you have been disabled for 8 years before the ANS is addressed, often way too much has gone under the bridge to figure out what was going on earlier. i had many other tests to rule out things with Chronic mono later CFS being my initial dx.

I didn't realize I had it from birth until I reflected on my horrible exagerrated MOTION SICKNESS. Could NEVER do long car rides or amusment park rides. Had bad constipation as a kid and in those days they gave you mineral oil in chocolate milk and or sometimes milk of magnesia, OR (YIKES!) Exlax that used to be disguised as "chocolate candy."

Also I had horrible hypoglycemia on fasting and a couple times had grand mal seizures though my mom claims I only had one. I almost for sure remember two because I remember waking up in ER and they would give me a big shot of sucrose or something to bring me out of it and once I almost went into a coma, whatever that means.

Also, as a little kid and until about 7th grade, I WAS SO SHY it was paralyzing! I would hide in my room or closets when company came to the house. Like perpetual "stage fright"...also an ANS disorder.

Later, I developed reactive blood sugar issues. Also while younger, I could often handle booze quiet well and other times, not well at all.

Also, looking up almost always gave me vertigo.

I always got claustrophobic in elevators which I attributed to stress and anxiety and now realize it's the mild G force or shimmy on some elevator cables...some move really fast, some are slow.

So after a lifetime of this stuff and to have it cut into social life, then work full time and ANY AND EVERYTHING, we knew, I have ALWAYS had this.

Why the worsening version in the last 15 years, especially the last 6? Nobody knows. Dr. Grubb and my doc says it JUST SOMETIMES happens.

So I move and exercise the days and times I can and if I have HORRIBLE days or weeks where that is not possible I roll with the punches.

But maybe in the last 5 years (I saw Grubb in 2001) Some ANS centers have thought of the 1/3 rule for their pts.

[Dizzy Dame]

Yes, 80% improve and are able to live a "normal" quality of life. Now, that probably excludes becoming a marathon runner or mountain climber. I was a quasi athlete (surfed and rode horses) before getting sick and I've had to accept that even under the best circumstances, I'll probably never surf regularly or ride competitively again. Still, most POTS patients (especially with sudden or viral onset) recover most of their functioning within a few years.

I hope you get better too!

-Lauren

[MomtoGiuliana]

Never heard this -- no studies I know of to back it up--I would assume this is her experience/what she has observed. What my POTS doctor says is that most people get better eventually with appropriate medications and lifestyle/diet changes.

Katherine

[Kimba]

Nurses at Dr's office have indicated that 1/3 of POTS patients get over their symptoms and they never reoccur 1/3 symptoms get better and 1/3 seem to stay the same or get worse. Would like to know if any one agrees with this. I am hoping and praying and trying to stay positive that I will be the 1/3 the gets over POTS just don't know how long this will take.

My symptoms are fatigue, brain fog and internal thermostat broke.

Taking lots of fluid, salt, B-12, copper, levsin, lopressor and remeron.

Have heard the same observations from the nurse's at my Dr's office - Cleveland Clinic. I am still new to this POTS thing too (diagnosed June 06), but by sticking to all the diet, lifestyle and medicines prescribed, I think I am beginnig to see some positive changes. I am able to think more clearly recently and feel less brain fog - although it is still definitely there all the time.

I too am shooting for the 1/3 that can get past this with no real lingering effects. Good luck!

[futurehope]

Kel,

Just an added side light. Remeron can make you worse. I do not know how long you've been on it. Maybe you're adjusted already. But the Remeron brought my POTS out of the closet.

I believe it is on a list of meds that can make us worse.

[dmaejean]

Hi Everyone, I love this forum. You all are so informative. Ijust had to move in with my daughter because I have been turned down for SSDI twice and am now waiting for a hearing. I hope I am in the top one third too, but I went to a new cardio last week who is familiar with autonomic dysfunction and she said that in her 28 years of practice, she doesn't know of anyone who completely recovered. Encouraging, huh? Anyway, we are experimenting with meds. She increased Midodrine to 5mg, and I've felt worse since. Does anyone have any long term experience with Midodrine? Thanks

Donna

[Sunfish]

donna -

you may want to do a search on midodrine and/or proamatine (the brand name) as there have been many discussions about it on the forum. personally i have been it for most of the past ten years, so i'd say that is long term. it was a lifesaver for me initially and is still an important part of my med collection that i wouldn't want to give up.

melissa