Prognosis

[mvdula]

When I saw Bev at Dr Grubb's office, she said the people that got POTS after a virus have the worst prognosis. This is contrary to everything I have read, including Dr Grubb's papers. Maybe she misspoke, but I even said - What?? That's the opposite of what I have heard - and she just confirmed what she had just said.

I guess I am just more confused in general after having gone there. partly bc of this, then my TTT looking somwhat normal to me but getting a POTS diagnosis. Also, Bev Px me Coreg (normally for heart failure) - which I have heard a ,lot of negatives about, so very reluctant to try it - esp since my tach is not that high. My ANS dysfunction does not seem to make my bp or hr go too abnormal......anyone have any thoughts about these things.

oh, my POTS apparently came postpartum.........would like to have an idea og prognosis, but no one seems to be able to give me that...no family history

[lloppyllama]

Yes I too thought that post viral pots was the "easiest" to recover from....thats weird that she would tell you that, since I believe alot of us thought it to be the opposite. hmm I dont know what to tell you. As for that med, I have never tried it or heard of it, so I'm notmuch help there either, good luck!

Mary

[pat57]

I know nothing about Coreg, but I know Norpace has a bad reputation yet

I'm very thankful for it. It works great for me.

good luck, whatever you decide

[yogini]

I think Flop had a really good post on prognosis recently - I tried to find it for you but couldn't. In any case, according to everything I've read, and what Mayo told me, the prognosis post-virus is very good and same thing for post-pregnancy. I know things can be incredibly scary when you first get your diagnosis. No one can tell you for sure how things will turn out, but I think most people do improve or at least find some stable ground and are able to be fairly active. I think people usually don't get worse unless they've had this from an early age and/or have other conditions which complicate things. It may take some time for you to find a good dr, get the right meds, get into an exercise routine, figure out your limitations, etc...not to scare you, but, to be perfectly honest, that may take a few months (or longer). But after you make it through that initial rough period, things do get better, I promise! Hang in there!

[Sophia3]

I always heard the 80/20 rule. 20 percent of us BORN with this and the rest post 'virus' or whatever label ..where it comes on SUDDENLY.

Looking back we see I had this my ENTIRE LIFE. I was told those of us born with it have no chance of recovery and are simply kept comfortable of symptoms...Especially since many of us get worse as we go thru many decades.

Kind of shocked a nurse of an ANS expert would make such a comment.

[DancingLight]

Sophia,

How do you look back and say "I've had this my whole life?" What are the cues we make this decision on? (This question is curiousity not a harsh tone, which it seems to have in email format!) I really have wondered how to piece this all together and how to piece together whether it was soemthing 'coming all along'.

Did you have any sort of sudden/flu-like onset or all was gradual?

I'm one of the folks getting worse. And it seems, honestly, there are a lot of us out there. But, we think I have Chronic Lyme (supported by my ANS doc). I know this is controversial on the board, but I'm going with what my doc, who is one of the best in the country, believes.

Thanks!

Emily

[Sophia3]

DLight

I just thought my above comment was common knowledge...it was 9 years ago or so.

I am in the 20 of GRADUAL ONSET OR upon closer examination, had 'milder ANS issues my whole life'

CRIPPLING shyness as a kid until I was in Jr High. HORRIBLE motion sickness as a child...digestion issues (constipation ) HORRIBLE hyPOglycemia that caused seizures on two occassions as a kid. SICK when blowing up balloons (valsalva like maneuver) when I got stressed "I vomited". Never did well in hot weather or super cold. Always had body temp issues. For DECADES...only recently am I 'normal 98.6' on thermometer but still feel like ****. ALWAYS had CRIPPLING STAGE FRIGHT for singing and still do..even if I could breathe well enough to sing.

AND I spoke to folks who ran foundations and ANS EXPERTS who agree MANY are born with this...simple as that. Many more symptoms but I just as soon not rehash them...then when I got mono in high school, recovered...but EVERYBODY gets mono so 'that was not a turning point'/

I go by what a plethora of old articles sent to me in the late 90's by many helpful people, too.

So, YES, many are BORN with this.

For the original poster I always heard to pinpoint a virus is very tough to do unless quickly dx OR if you are a person who can say "On such and such a date I woke up feeling ill, and was never the same" and have STAYED ILL, and ruled OUT as many things as possible, that is SUDDEN ONSET.

As to recovery, that is sketchy at best but many do recover if given the right meds at the beginning and seeing a SAVVY doctor.

sorry for the thread hijack/drife but DLight asked.

[Ernie]

Hi,

Those that have the genetics have the worst prognosis. There is no cure for us.

[flop]

Hi, I will have a search for my recent post on prognosis (brain fogged at the moment and can't remember what I wrote!).

I have always believed / been told that the people who get post-viral POTS have a substantial chance of complete recovery in 2-5 years. I will have to look up the details when I get home tonight as I'm at work right now.

Take care,

Flop

[flop]

Right, I'll have a go at putting a link to that other post. If it doesn't work it can be found in the thread "another trip to the ER, is this the next stage?"

http://dinet.ipbhost.com/index.php?s=&...ost&p=91129

Flop

(fingers crossed)

Edited March 4, 2008 by flop
link to post fixed

[delphicdragon]

From what I've read and been told, people who got POTS after a virus or who got during late adolescence had the best prognosis for recovery. I would like to think that if your POTS had a distinct trigger (not genetic) there was a likelihood of recovery or remission.

For those of us with some genetic component, (I have Ehlers-Danlos, which I believe precipitated this) the chance of recovery/remission is, I believe, much less.

Hope that helps.

Sara

[pearsjon]

what about people like me, who have the primary form of dys. they can't find anything wrong with me but dys. i am not sure if i was born with this. i always had car sickness as a child. had a strange leg swelling and paralysis about age 9 or 10, no one could explain. multiple ear infections as a kid. that's about it. nothing major.

i don't see many people on any of the forums who don't have something else going on pre dys like me.

i feel alone in the fact that it is only real dx so far. not in the way that i want something else, dys is enough thank you very much. but more in the sense thatit is hard to compare what helps and what doesn;t when it's just dys.

i think i am loosing what i am trying to say. not typing out like it sounds in my head.

am i making any sense?

[Maxine]

So far the things I have read have all said the prognosis is much better for those who have POTs following a virus. I have also heard this from Dr. Grubb, and a couple other doctors.

I feel for those of you that have primary POTS or dysautonomia, or genetic. I'm not really thrilled about having EDS, but at least we may have some idea where my POTS is stemming from, considering that I have vascular involvement with my EDS. It seems the most logical answer anyway.

What are the results of your catecholamine test? My dopamine came out high, but my norepinephrine, and epinephrine levels were normal. However, I would like to see the levels while having one of those attacks. I know exactly what your talking about-----------(the revved up feeling, but at the same time weakness and fatigue)---------to me, there is nothing worse then this feeling. Hopefully you can find something to help control the attacks, and keep them from getting out of hand. I take wellbutrin, and although it's a stimulant, it somehow helps lesson the severity of the attacks, and helps with my fatigue.

Maybe you should get another opinion, or wait until you can see Dr. Grubb, and discuss the prognosis further with him.

Good luck, I hope your prognosis is good, and you won't have to deal with long term chronic illness.

Maxine :0)

[mvdula]

I am still awaiting my catecholamine results. My cardio's nurse should call me back later today or tomorrow with full results (all lab told her so far are that they are in normal ranges, but didnt seem to specify the lying/sitting/standing #s - I will be mad if I have to do it again!!) I have no family history - and was generally very healthy as a child and young adult. All pregnancies were fine, except the last one which was much harder - I just attributed everything to pregnancy though. My POTS Sx came on somewhat in pregnancy, and MAJORLY when I cut down and then quit nursing around 1 yr postpartum. So, expecting good catecholamine results since no history at all. All the stuff Bev said totally confused me though - she thinks I have JHS - based on being a gymnast as a child, scoliosis, and a few things like hyperextension of my elbow (slight). However, my husband has just as many Sx of JHS (like touching hands to floor, etc) - and no problems whatsoever. Bev said I probably just didn't notice/compensated in the past. This did not sound right to me at all, as I never had any problems!!!!!!! She also strongly suspected that I am hyperadrenergic - but with no family history or signs before the last couple years, I don't agree. My bp fluctuates and ahad a couple higher readings during TTT, but generally normal - 115/75 or thereabouts. Esp after hearing her say the post-viral has the worst prognosis, I'm not sure I trust most of what she said - and do not want to take what she prescribed - Coreg (based on suspicion of hyperadrenergic I think).....

[Maxine]

Mvdula,

Do you have an appointment with Dr. Grubb coming up? You must be very confused at this point, and you need to get some kind of direction-----------

I'm sorry your appointment didn't go very well, and I hope you can get things figured out.

As for a JHS you definately need to get the opinion of an expert in EDS----(ehlers danlos syndrome), as an EDS specialist would be able to tell you weather or not you have definate JHS/EDS. No one should diagnose this other then somone who has experience in JHS/EDS conditions. Weather or not Bev gave you a diagnosis, or strongly suspects this----------I would still get another opinion on that as well.

I was misdiagnosed as NOT having it-----(based on body type--- ----------not a skinny stick). However, I was always very thin until I got POTS and started wellbutrin which made me gain the extra weight-----then went up to a size 12. I trusted my instincts and went to see an EDS specialist in Cncinnati.

Not only do I have hypermobile EDS, but I have vascular involvement, and skin fragility. The EDS has caused spine instability, and cervical spine/cranial instability that has turned out to be a nightmare. I'm literally coming unhinged everywhere. Since I have not been able to use my back for anything, my shoulders, clavical, and sternum have developed instability and pain, as these have been compensating for the instability and weakness in my spine. I have already had surgery on my cervical spine, and have other neurosurgical opinions that confirm my instability. A couple neurosurgeon have followed my care until my official EDS diagnoses. The Cleveland Clinic, and a neurosurgeons from NY also thought OI has EDS.

Now my GI doctor thinks the 4 cm diverticuli in my duodeum are caused from the EDS, as well as the excessive diverticuli in my large intestine. Had I listened to the Doc that said I DON'T have EDS because I'm "not the body type", I don't no where I would be now. Since then I have established an EDS specialist, and he connected me with a good orthopedic surgeon to watch my instability, and now I'll be in the EDS study at NIH/NIA on April 1st and 2nd. The dates for this was changed yesterday----it was April 3rd, and 4th, but Dr. McDonnel who is doing the study had to change it.

Trust your instincts, and get another opinion. I know this is hard, as finding a doctor who takes this seriously is difficult.

Maxine :0)

[mvdula]

Well, I do have the body type for JHS - 5'1" and about 95#s. Always been tiny, but never had problems at all. My scoliosis wasn't even noticed until I was 19 - and that was by my boyfriend (now husband!) - no Dr ever noticed anything. Based on what I have read of the symptoms though, I don't fit any better than my husband or kids. Bev asked me if I often dislocated things - I said never - but she said she could tell I have JHS even just by the way I held my shoulders - huh????? So, I can barely touch my hands flat on floor while standing (w/ lots of pain in back of legs!), and can overextend (slighlty) my elbow joint. I cannot touch my thumb to my forearm at all - my husband can! Nor do I meet any other criteria or have any skin symptoms (do have scoliosis though, but has never bothered me). My main problem is these attacks. Nothing else bothers me much! The palpitations are usually no big deal - unless I get a run of a few at once - or a big one - which is scary, but have gotten used to them overall. I can go days sometimes w/o any, usually 1-2 per day though. Sometimes more with anxiety or hormonal changes. Get chest pain in a completely random pattern, which seems to have no relation to anything else - sometimes I am sure it's anxiety, sometimes who knows. My migraines are only once per month - right before period usually - and my Butalbital works for it if I take it soon enough - only take 1 and that fixes it (have had the migraines for about 6 years). Cannot eat large meals, but have always been like that - think I have very small stomach. So, really just concerned about attacks. Basically, since I am no meds yet, I just avoid strenuous activity. There are times when I can do more without attacks - who knows why. I have certainly not gotten any worse, so I guess that's a good sign. If I date my POTS from early pregnancy (not sure about this), then it has been about 2 years. If I date it from my obvious super-onset (sudden gripping fatigue......panic attacks.....weakness), then it has been about 6 months. Oh, and the heat intolerance I am concerned about - we'll see how summer goes. Last summer was my first problem - grew up in Texas, so no problems ever before last summer (even 8 months pregnant in August '06, was fine in 95 degrees).....

[Maxine]

Actually, before wellbutrin I DO have the "body type". This is the biggest bunch of you know what I ever heard. People's weight change, ect. Your born with EDS-----it's genetic. I don't think "body type" is the only thing an EDS specialist take into consideration. There is a careful, detailed examination, genetic history, beighton scale, and other testing done before EDS is considered. The only time I think "body type" is actually a definate consideration is with the Marfan's type IV-----tall, thin, thin lips yada, yada.

There is a lot more involved into getting a diagnoses of EDS. I can touch my hands flat on the floor, bends fingers more then 90 degrees, hyper exten elbows, ect. I can also wrap my legs behind my neck, but that's a bad idea considering the instability. I have all the other symptoms, and I'm upset that I wasn't taken seriously by this particular doctor. He even saw me when I was sickly thin---------the weight gain happened after the wellbutrin.

If I were you, I would be careful, and aviod stress. Stress is terrible for POTS or ANS dysfunction.

I know those attacks are rough, I used to have them so bad, I was not even able to handle company at my home. I just got so over stimulated, and I would just sit there and shake. I lost 25 pounds in 2 months going from a size 8 to a 6. It was a bad crash.

Heat is very hard on me, and it gets worse with each year. I hope you do not progress with the heat problems like I did. It does not sound like you have the same complications that I had, but when I was 33 my only symptoms were the heart issues, and panic type attacks. I had no fatigue, pain-----none of the other problems I have now.

AGAIN, A word of advice------------------AVOID STRESS. My experience with this can assure you this is bad news for POTS.

Most of the people I met with EDS were Average size, and some of them even overweight, but not "OBESE".

Take Care,

Maxine :0)

[morgan617]

I've had symptoms my whole life too. And have always heard that post viral has the best prognosis. There's some mutated gene in there somewhere they just haven't looked for or found in us lifers I think. As far as post viral, I think there must be a propensity for it and the virus or whatever triggered it, sets it off. morgan