Recovery

[gdomaracki]

Hello Everyone!?!

I've been a little uneasy lately and I figured I would present my worries to my pots people

I know that not every person with pots has the same prognosis. I became ill in Oct 05 after a viral infection, and diagnosed in Feb 06 with POTS/NCS, w/underlying chronic fatigue. My doctor told me, that it would take 2/3 years but that I would make close to a full recovery.

Here's the thing....

Its been nearly a yr/half now, and I'm afraid that I'm not making the progress that I should be.I am doing tremedulously better and am able to do alot more, but I'm still symptomatic every day and am having spells. My doctor "says" that I'm doing well and that he is still expecting a near full recovery. Now I know he wouldn't lie to me, per say, but is it really that common to have a full recoverys. I guess what I'm trying to say is that I'm scared. I've gone this far thinking that this illness is only temporary, and now I'm coming to the realization that I might have this alot longer than expected or for the rest of my life.

Can you really have a full recovery, or at least become a-symptomatic?

Any thoughts/comments will put my mind at ease, thank you

Nicole

[lloppyllama]

I think it depends on your age partially. For people like me who get it in their teens, there is a very good chance of recovery by your early twenties. Im not sure about the stats for adults, however if your doctor said that you should make a near full/full recovery the odds are pretty good in your favor that you will.

You said that you have made a tremendous improvement since when you first started on your path to recovery a year and a half ago. Now you have olny used up half of your time, so to speak, so just look at how much progress you have made in the first half, you still have a whole other half to go. And even though you probably wont double your success, since you wont be having as many things to suppliment into your life to make you better since you already have done the common ones, you will still find more things that work for you in helping you feel better.

Good luck! Try to not dwell on what might happen, and just work on now, and getting healthier today and tomorrow, not 2 years from now.

Have a wonderful evening!

[MightyMouse]

Age may be a factor, but those who have viral onset are more likely to eventually improve or recover as opposed to other types of onset. For some, recovery may take a number of years. For others, recovery is partial. For still others, the condition remains present.

Nina

[Jan]

Recovery is possible. I have a friend with sudden onset POTS who is back to normal. He missed 6 months of work, went back part time for a year or so and now is fully recovered. He is even riding his bike in marathons. He still makes sure he drinks a lot of liquid, eats salt, and avoids mowing his lawn in the heat of the day. Not bad if you ask me.

You aren't going to find people who have recovered on this board because they are out having a life.

[MomtoGiuliana]

I consider myself "recovered". I was very ill in 2002/2003 during and following pregnancy. Following an eventual diagnosis and treatment, I became well enough to resume a very normal, active life. I still load salt and fluids at times, especially near my period. I cannot exercise the way I use to--but I am back to aerobic exercise. I had a flare-up in January 2006. I don't know what the future could hold for me with POTS. It may continue to wax and wane. I still use an SSRI and beta blockers (the latter occasionally). But overall, most days I don't think about POTS and I am far far better than I was several years ago--even when I have flare-ups.

[yogini]

It's been 3 plus years for me. When I first got sick my docs told me I would be completely better in 6 months to a year. It took me about 2 1/2 years to feel a lot better. At the end of last year my situation was similar to Katherine's. I was taking very little meds and living a very active life. I had a bit of a relapse due to external factors and haven't been quite the same this year. All along, my recovery has required a lot of effort in terms of exercise, rest and gently pushing myself to go off of my medication. I'm hoping that getting into that routine again will put me back on track. But even in my current state I'm able to be fairly active and can't complain too much.

The articles on POTS seem to say that most people do recover. It is hard to tell if this is true from people's experiences on the forum. If doctorguest is reading this, I would be interested his thoughts as to whether that happens in practice.

[P SUDIK]

I don't want to be negative,just honest.I have had POTS for 4 yrs.with no improvement.Mine came after an extensive lower back surgery and or an infection in the surgery site. No one seems to know for sure. I am 59 yrs.old and to most of you that sounds so old,but before the surg.I was a very young,very active,working full time 55 yr.old. I still have hope that that my condition will improve,but I don't think so(anything is possible).

Wishing all of you the best,Pat

[JenniferInOhio]

I've officially had POTS for 2 years. I think I've had a mild form of POTS for several years prior....looking back sometimes I just felt "off" for no good reason and food or drink always made me feel better. At times, I noticed my heart would be racing, and I would sit down and it would go back to normal. Of course, none of these things interfered with my life so I really didn't think much of them at the time. Only now, can I think back to those times and think I probably had POTS and didn't know it.

I was diagnosed after a laparoscopy - my heartrate went soaring, and I had really bad adrenline rushes after the surgery. I am guessing that the surgery/anesthesia brought out my POTS for the worse.

I consider myself back to where I was before I knew I had POTS. Of course I have symptoms, but I had them before. Now I know that my mild symptoms like heart racing and an "off" feeling are due to POTS. Back then, I didn't think much of them. I am almost fully functional. I have to watch the heat and can't exercise like a mad-woman. I'm not on any meds and I do pretty much (except for when it is extremely hot) what I want.

[bgsu4]

I have had POTS with suspected Post Viral onset for 27 months now and Dr. Chelimsky (neuro from University Hosp Cleve) said I should be better in 2-5 years. Its not clear if he meant from onset because I had mild GI problems (they have cleared up) in April '04 4 months after a bad virus, first full blown POTS adrenaline type attack in April '05 and since April of '06 (when I started seeing Dr. Chelimski) I have actually felt worse. I think the past 14 months have been mentally draining more than anything.

The first year stunk but I pushed and got my diagnosis by January of '06 when I begged and begged for a tilt because my HR would go from 50 sitting to 95 standing and I knew that was wrong from my profession. In April of '06 while exercising I experienced a BP drop with lovely palps and I have had a hard time exercising since. (I'm an exercise physiologist and I love exercising so mentally its killing me) I wont drive on the highway after experiencing my 2nd full blown adrenaline adrenergic type attack in May of '06 ( the first was also in my car I felt great because the first time I got right back to driving but the second one got me mentally) I lost my job in March due to funding, after 10 yrs and the added bonus of them actually helping me out it took alot out of me. My Father who was a huge help to me passed away in May so now I am just pissed and frustrated.

I guess what I am getting at is I am also very frustrated and have wondered daily is this going to go away. I am going to speak with a chronic disease management specialist at the request of Dr. Chelimski. (He said 2 weeks ago I seemed a little depressed hmm I wonder why)

I have faith that God will heal me and it may take 5 years and I'm not always positive but I do try to tell myself daily of the positive things that may have come from this. I got to spend alot of time with my dad the last two years, more than if I did not get this. I'm alot more patient than anyone ever gave me credit for. I do not take the little things in life for granted anymore (**** a 15 minute warm to hot shower is as good as a 45 minute cardio workout at 80% max hr to me now) My Lutheran upbringing has reemerged and I know I have faith in my prayers more now.

I am very frustrated also and I think that is okay. I know the specialist I talk with will preach acceptance and so forth. I will never fully accept POTS as this is how it is and will be so live with it. I accept that this is a portion of my life, I am trying as hard as I can and I will look back on this as a learning experience.

I apologize for the rant and basically want to say I feel that if you think you will get better it will help alot. I am trying to learn not to put a time table on it because everyones body is different and I feel that those of us with post viral onset will see improvement at some point. At my dad's wake I stood for about 4.5 hours with little problem and felt like hey my body can remember how to do this because I needed it to (I have learned over two years not to get my hopes to high though, I paid for it about a week later when it got real hot out I just know that the more positive my thoughts have been the better I've felt and the opposite is true with the negative days also.

Take care of yourself.

Take care

[gdomaracki]

Happy Monday!!

I wanted to thank you all for your comments on my post. They were very informative and encouraging. Its so wonderful to know that there are people out there who care so much and are experiencing the same hardships as I. Thank you!

Nicole

*bgsu4-

How sorry am I to hear of your father's passing. Your in my thoughts and prayers.

Trying to keep a positive outlook on things can be so frustrating when you feeling like the world's against you and i definately agree that this is a life changing experience that has brought me also closer to God. My delemia is that I'm waiting to have my life back so I can use the experience that has changed me.

Take Care

[Foxyblue]

Hello everyone,

I have to say I was surprised to read that a few of you have doctors saying you could be better in a few years. I have not heard that. I developed my POTS during pregnancy 3.5 years ago. I had one doc say most POTS problems go away after menopause. But I know there are some people on here that have passed that stage and they have told me they still have it. Perhaps if you develop it after a viral infection it can just "go away"? I'm very confused.

Bri

[lloppyllama]

Your chances of getting rid of POTS do depend on how you got it, age can also factor into things.

As mightymouse said: "Age may be a factor, but those who have viral onset are more likely to eventually improve or recover as opposed to other types of onset. For some, recovery may take a number of years. For others, recovery is partial. For still others, the condition remains present."

So depending on how you got POTS, your recovery outlook will be different, also everyone is different so you cant be totally sure about how things will work out in the long run.

[MightyMouse]

actually, I was told my POTS would get WORSE at menopause.

[stampingamy]

I really appreciate this post as this is something I have been wondering about. I am lucky in that as far as I can tell I have a really good neuro who trained under Cheimleski in the Cleveland area. My only concern with him is that he has told me that we need to find the right combo of medicine and non medicine treatments, follow them for a year, then start to wean them off to see if I will continue to need any of them. My treatments are salt loading, pedialyte at night, lots of fluids, SSRI, and florinef. I went from .5 mg to 1 mg in March. I am concerned that when i go in September we will want to continue to up my florinef to get my symptoms to go away completely. I don't want to continue to increase the meds.

I was diagnosed about a year ago, had symptoms for years before that but they got much worse last spring. I am doing MUCH better than I was when everything flared up, but some days are bad - I trip over my own feet, I feel my heart beating so hard, I have headaches, I say the wrong words, I run into walls, visual disturbances etc.... They symptoms aren't all happening at once now and typically aren't as intense, but still happen.

Part of me wants to think I can be rid of this completely, but the thinking part of my brain wants to acknowledge that this feels like for me will be a chronic condition that I need to learn to monitor.

I'd love any more of your thoughts on this.

Thanks,

Amy

[lloppyllama]

Amy,

I totally know what you mean when you say, "Part of me wants to think I can be rid of this completely, but the thinking part of my brain wants to acknowledge that this feels like for me will be a chronic condition that I need to learn to monitor."

I really want to get better and rid of this illness, but i honestly feel like, for me it may never go away. And i dont know how much i can trust that "vibe" that im getting, because i mean it really could mean nothing, however for years before i got sick, i had this feeling that at some point in my life, i was going to be very sick...haha now dont go thinking im some crazy person all into phsycics and stuff, because i find that kinda out there and all, but still none the less i thought i would get sick, and i did.

So hopefully both of our thoughts are wrong, and we all get better completely!

Have a great day!!

~Mary

[roxie]

To those who said they said consider themselves "recovered" what does that mean? I guess my biggest questions are like.... does that mean you don't have to take rest breaks? Do you have to use a wheelchair to do things like go to the mall?

I'm very curious, I guess recovery means different things to dfferent ppl. I have a dream of being able to go to the mall without a wheelchair, but that may not be up at the top for other ppl. so I'm just wondering what you all think

O, yea and the recoverd ppl,. what did it take to get there?

Madelie

[Suzanne]

I have had POTS for 4 years with no sign that it is on the way out. Florinef made a big difference, but learning to manage it better has really helped. I have hung on to the recovery process, wishing to be better for so long, it actually made me worse. Now I am trying hard to accept my limitations and try and make my life meaningful in a different way.

Great to read that so many have improved, I can still hope then.

[Star382000]

I haven't read the rest of the replies, but I thought I would respond to your original post.

When I was diagnosed I was told that recovery would hopefully take place in my early 20s but it is something that I think giving just a few years to is way too little an amount of time. I was diagnosed about 3 years ago and many of my symptoms are mostly managed now, but other symptoms are popping up. I am by far doing much better than I was when I was first diagnosed, but I think a main component to that is that my attitude has totally been changed. I'm no longer focused on "when will I be better" but instead "what am I able to do and how can I live with this and not let it define me."

I think a main thing is to, while maintaining hope for the future, finding ways to live with a healthy illness

[Star382000]

To those who said they said consider themselves "recovered" what does that mean? I guess my biggest questions are like.... does that mean you don't have to take rest breaks? Do you have to use a wheelchair to do things like go to the mall?

I'm very curious, I guess recovery means different things to dfferent ppl. I have a dream of being able to go to the mall without a wheelchair, but that may not be up at the top for other ppl. so I'm just wondering what you all think

O, yea and the recoverd ppl,. what did it take to get there?

Madelie

I think it is different for everyone (I'm not very active in this forum, but am VERY active in DYNA) and that it's good to set attainable goals for yourself, and when you reach them, set more. Gradually you will find that you are recovering, even without a "cure"

[BuddyLeesWife]

We are hoping that my husband is "recovered". He was diagnosed with NCS after he began having frequent episodes of near syncope and syncope. His symptoms started in his 20's but mostly when he was worn out from working long hours OR following a late night partying with his buddies. Things really progressed about 9 years ago after being diagnosed with Epstein-Barr Virus; however, his identical twin suffers from more severe NCS symptoms and he did not have EBV (he also didn't do the late night partying). So, we don't think his is due to a viral onset but more likely that the EBV wore down his body even more and allowed the NCS symptoms to take a stronger hold.

It has been 9 months since his last episode! Yes, he occasionally still gets fatigued and sometimes a little down in spirits BUT there has been no syncope, no pre-syncope, no extreme exhaustion, no confusion, no uncontrolled anxiety, no deep depression, no extreme sweats or hot, hot, hot body temperature and no incontinence! He says he feels better than he has since before the EBV diagnosis. He is still on some medication but off many and he continues to use the CPAP machine nightly. We both believe the improvment in sleep has been the key to his overall improvement in symptoms.

Maybe recovered isn't the correct term - I guess we are hoping that he is able to "permanently manage" his symptoms.

[lizb]

I found this topic very interesting!! I have had POTS for nearly three years and recently I have felt that the symptoms are not as bad as they were a year ago. But when I think it is getting better, it rears it's ugly head again. However, for today I am definetly feeling better and I will just continue to take my life a day at time enjoy the good days and cope with the bad days.

Take care.

Liz B X

[ramakentesh]

I doubt anyone fully recovers. More it will probably wax and wane for the rest of ones life.

That being said, I believe that like autoimmune illnesses like M.gravis, the first periods of onset are the worst.

[Jordan5815]

They have done tons of tests on me even autonomic lab I have the kind where my blood pressure rises when i stand. My doc said chances are good that I may even make a full recovery even tho mine was gradual and not sudden onset.

[ramakentesh]

It does happen. But every doctor has a different opinion on it and as there arent any decent studies on the long term prognosis im pretty sure its just that, an opinion. My doctor has a few patients that are described as recovered im pretty sure.

In between bouts now days im pretty good - only get about 10% of the symptoms I got when i was really crook. A few months back I was running 3 kms three times a week without any noticable symptoms (just getting dizzy at 11am every day a little at work).

But I still get bouts so I certainly wouldnt say Im recovered. Id say that until recently Ive been a tonne better than I was though.

Incidently I have POTS - on standing sometimes my BP goes up, other times it goes down. So ive often wondered about the validity of that diagnostic point to differentiate sub-types of POTS... Infact when my BP goes up when i stand i tend to feel better than when it goes down and I feel dizzy.

I understand that Grubb states that this differentiates the two subgroups but there isnt actually an accepted differentiation by all POTS specialists.

[persephone]

I believe in recovery. I was diagnosed in Jan 05, aged 23. I'm now 27 and can work full time for my PhD. There are times- eg, just before a period, or if I have a major infection/ailment- that I know my bp drops and my hr rises, but I haven't used a wheelchair for over a year. This fall I went to College without even so much as a stick. My pain from EDS is heaps better, and I spend my days working in a library reading room that has 75 steps to it!

I still monitor things- I know that if I have a late night/too little sleep, for instance, I'll feel crappy.

But I for one have experienced a recovery- and find that keeping tabs on things lets me stay pretty well. I would say I'm virtually back to where I was before the POTS got bad.

Life can- and does- get better for many of us.