Prognosis Anyone?

[songcanary]

Hello to all,

After three miserable years, I was recently diagnosed with NMH and hypovolemia at the Cleveland Clinic. My symptoms have improved greatly since drinking 2 L of salt water daily, plus lifestyle changes. I still have mild lightheadedness and occasional nausea. I am taking doxepin 25 mg and 5 HTP 100 mg plus a multivitamin. I am currently not working, a job I love. I was reminded last week of how frail I really am when my hubby landed in the hospital with pneumonia and I relapsed under the stress.

My question is: Does anyone ever get over this? My internist said that this may not be a life long thing. I haven't had the guts to ask my CC doctors, at the time I was just relieved to get a diagnosis. From reading these forums, I feel like I'm in for a long ride. Has anyone else improved to the point of being able to live a relatively normal life? I am very grateful to be feeling better, but at this point my function is pretty basic. Thanks for such a wonderful forum.

[Simmy]

While there have been documented cases of patients recovering after many years and even reports of those who spontaneously heal for no apparent reason, these are admittedly rare. However, one rule of thumb seems to remain somewhat reliable ? if you acquire POTS during your teenage years you are likely to ?outgrow? it within a few years, but those who acquire it later in life do not share the same optimistic appraisal of the situation. But every case and every human is physiologically different, so each individual case can ultimately write its own conclusion.

The good news is, many of those who are afflicted for life manage to get control of their symptoms to the point of almost being human again and can live long and happy lives, albeit in a somewhat diminished capacity.

Never give up.

[Guest tearose]

Hi and welcome!

You basically answered your own question...when you had to do what physically normal people do you relapsed. Do you think you could have done better if you didn't have dysautonomia?

I too am unable to be employed. I do what volunteer work I can so I mix with people a little and do some community service good. I've had to relearn so much after relapses that for me to manage my home is enough. I struggled with the ethical question as to whether I owed it to society to go out and try to work when feeling I was managing better and then I went out and tried it. I wound up in a major relapse and nearly lost my life. You must speak with your doctor and know your body and what you are capable of. Even after that there are not going to be struggles.

To address the long term prognosis issue is very individual. I have lymphedema and can't do the major salt loading you can do. I manage my dysautonomia based on my body challenges. I have to be aware of my body systems all the time to manage.

best regards,

tearose

[songcanary]

Thank you, Simmy & Tearose. You are right, this illness seems to affect each person differently. I am having a real waker-upper regarding listening to my body, but that's a good thing. I took good health for granted for a long time. Right now I am just living in a constant state of uncertainty and I think that is what's really bothering me. I don't know whether to close my business altogether or hang on for awhile, or even to remotely think about working ever again. I am a self employed pet sitter and am using relief help right now. It is quite a shock because I was previously a very active person, as I imagine you all were as well.

I appreciate your taking the time to answer me. It is comforting to know that there is someone out there who really and truly understands! My very best wishes.

[basktbal22]

Songcanary- I have experienced significant improvement over the past 2 years since being diagnosed with POTS. I had to drop out of school and was having trouble getting around, even considering getting a wheel chair at one point. The doctors tried me on many drugs, all to no avail. The only thing that has helped is leg work outs with weights (which I did prior to my illness), recumbent biking, salt loading/water (using sea salt), and a bit of luck I suppose. I should note that I was diagnosed when I was 20, so this may have played a role? But I was far done with growing by the time I was 16. I am now back in school and doing considerably better, apart from the terrible skin flushing I get. But this may not be related to POTS. I think another part of my recovery was learning what hurt me and avoiding it (i.e. bending over, stairs, etc.).

[Chaos]

Welcome- but sorry you have need to join our group.

I think I've had symptoms for a long time but had a severe flare about 3 years ago after surgery and another one in July 2009. I too was diagnosed officially at Cleveland Clinic this summer. I asked the cardiologist there and her response was "If we can get your symptoms stabilized for about 6 months, the ANS may reset itself and then most people can wean off meds. Then people tend to fall into 2 categories... One group is just "done" and the other group is fine until something reactivates the ANS such as another surgery, virus, or major stress. Those people will usually need to use meds as a bridge during those times to help them until things calm down again." So, for what it's worth, that was the answer I got. When my husband said "oh good, she'll be better in 6 months" the doctor's response was "NO she has to be stable for 6 months and that can be the tricky part."

Anyway, I was off work for 8 months and have been able to gradually return to work very slowly (starting in April). At this point I'm able to work about 3 days a week for 6-8 hours a day which is thrilling to me considering how I could barely function last year at this time. I am also doing a cardiac rehab program which the doc at CC recommended I do. While I'm doing MUCH better, I'm definitely not normal and still have to plan around every activity I want to do. I still can't do anywhere close to what I was doing before and am relying heavily on my kids and husband to help on my bad days. I try not to schedule too much ahead of time for any activities because I still never know for sure what I'll be like when I wake up in the morning.

As the others have said, it's different for everyone but at least you know you're not alone.

Hope your husband is better and that you are starting to feel a bit better too.

Keep your chin up! (That way people will at least say "oh, but you LOOK GOOOD!" hee hee. )

[comfortzone]

I'm not exactly sure what I have or how to explain it right -- but some of the symptoms are pots-like ~ & I have to say I'd definitely keep focused on your dreams and on some goals that you set for yourself .... Because as odd as this crazy malady is in it's oncoming - I suspect it's just as odd or weird in it's out-going. You get educated the best you can, you get your clinicians on board to the best of your ability that are a wee bit knowledgeable ==> and then run with it.

By that I mean you do the meds, you re-think the meds, you do the things suggested by clinicians and by those on the forums as it applies to your situation - be it compression stockings, fluids, salt(s), certain exercises, certain postures, and you take very good care of yourself. You eat well, and give a good shot at resting well. And actually these are all the guidelines for healthy living even if you don't have a dysautonomia issue - when it comes to eating, keeping hydrated, sleeping as best you can, staying as active as you can muster.

Then by virtue of doing these things - treating yourself well and keeping a bit of a persevering attitude and filled with lots of hope - things most often do change ... Much of the time for the better. Be it your bodies chemistry at the time, the right mix of nutrients, the right sleep stages, the right fluid balance - whatever it is - things shift as you get to know what seems to click for you. Sure you have to be light on your feet - because out of nowhere you can get blindsided - but this time you are experienced and know that as sure as you are down - you can get better and do better again...likely just around the corner...

For me - one tablet of a beta blocker knocked my tachycardia right out the window! I'd have years in each of my adult decades when I would just 'run fast' as a baseline with some added PAT or SVT runs.... Well evidently my 'clock' reset itself to a normal heartrate just like that. Now the issue is blood pressure - any activity on my feet this week dumps it down the toilet so to speak ... then rest, then a headache and suddenly it's very high again -- several shifts like this in a day is a wretched way to 'feel' - like your body just has a mind of it's own irregardless of how you feel about it.....much like the pots-folks when their heart rate takes off like blazes with no rhyme or reason.

But these symptoms seem to ebb and flow as I read these forum posts by people - they write to pronounce a new victory and they write for encouragement when the page turns dim or sour....But the biggest thing I see is that nothing ever seems to stay the same. Either you uncover a new tactic to help symptoms, or the symptoms dissipate somewhat....or you get slammed to your knees and cry bitterly - but you don't stay there 'forever'...... You may never 'lose' the dysautonomia but you lose the all or nothing thinking about it...& begin to bend with it instead of fiercely fighting it.

So for me - whether it's possible to ever work again or not - I have no idea. I did try to return one year ago after a year off and ended up getting 'let go' because I couldn't meet the physical demands of the job. Heck just getting off a couch in a patients home I was drenched in sweat with a heart rate of 140 and my brain just wouldn't work - one of the most scariest times I've had...but they liked me and offered a desk job if they ever had one - since then I've done nothing but try to turn over every stone to find out what the heck it is that does this to me... So I just keep at the basics of exercise, eating better, sleeping better with a deep inside intention of getting back to work. If it doesn't work out that way = well at least I'll be at my fittest and healthiest to deal with the crazy illness and the rest of what life has to offer.

So I may be down - but definitely not out....& if at such time I ever do see that I cannot work as a permanent thing - you will absolutely find me volunteering if I'm not flat on my back in bed - cuz I'm a people person and I think I do worse in my health if I don't stay connected.... I actually do work right now but it's not at my occupation. It's a job where I work 4 hours per day about 2 to 4 days per week. I am handling it so so -- it does feel good to be part of a team for sure - but I miss my chosen profession...

[songcanary]

Well, I had to laugh. If I had a nickel for how many times I've heard 'but you look so good...' This is great information and it helps me a lot. And there is lots of hope tucked in. I think I'm on track with doing all the healthy things, plus I am now able to practice yoga three times a week. Little steps. I really appreciate the feedback, I love you guys!!!

[Christy_D]

I see you are on Doxepin. So is my son. He started on 40mg and that helped a little. So they increased him to 100 mg and that seemed to help even more. In August, they upped him again to 150 mg and he has now returned to school. Finding the right dosage of medicine, after spending a lot of time on trial and error with a lot of different medications, seems to be what we were waiting for. If the doxepin has helped some, maybe a higher dose would help more.

Christy

[janiedelite]

I went to Mayo, MN, in 1/09 to get diagnosed. Prior to the diagnosis, I'd been to so many doctors who said "I know there's something wrong with you, but I don't know what it is." When I went to Mayo, I was using a wheelchair outside of the house and was unable to be upright except a few minutes a day. Once I was properly diagnosed, I started regularly using compression, mild exercise, pushing fluids/salt, cooling vest, etc. Within 6 months, I was able to go walking for several miles at a time (now I still can't stand still, but I do okay with movement for short periods).

After experiencing such a dramatic physical decline from 2006 to 2009, I was content with any increase in my physical abilities. I recently have looked into working as an RN after being disabled for over 3 years, just a few hours at a time for a few days a week in a non-stressful environment. I'm not sure if my disability insurer will be able to find any job that will take me with my current limitations. My hubby and I have decided to become foster parents which takes up most of my energy right now anyway. I do find that parenting is something I can do (with help) because I can sit/lie down whenever I need to.

My life has changed dramatically, and I believe that I have the same underlying illness as I was when I went to Mayo last year; I just know how to cope with my symptoms better. I have become so used to coping with my limits, but still there always seems to be something going wrong in my body. Lately I've been having bad GI pain and am only taking liquids.

Our lives will never be the same as before our illnesses hit, but our new reality can be very fulfilling if we choose to make the best of things.