Stories Of Recovery

[davecom]

I've seen scattered threads around, but there is there one place where there are a lot of detailed stories of recovery? I guess obviously those who got 100% better are less likely to be hanging around these forums anymore.

[Relax86]

I got better Dave. I feel most of my days I'm now at 85-90% me. I've even had a few where POTs/dysautonomia feels like it's behind me. Today for instance instead of feeling occasional moments of normalcy I had occasional moments of POTS. I can't pinpoint exactly how I got better but if I go back in my posts here on the forum I can see the slow transition. It took over a year. I'm happy with my progress, have to embrace it and try not to worry about the next time. I recommend finding forum folks whose symptoms mirror yours and gently stalk them....lol. I read tons of research and did some trial and error. I tried to really listen to my body, which seemed to be misfiring and seemed very foreign to me. I knew I was in there somewhere. Keep the faith. Good luck.

[looneymom]

Dave, you will get better. It just takes time to find the right medicines and therapies that your body will respond to best. Keep looking for answers and for doctors that will help you get better.

[ramakentesh]

Dave between August 2004 and October 2008 other than one brief period of dizziness i was almost 100% well. it can definately happen. Unfortunately a stomach infection and other stressors brought it back in my case but remission (permanent or long term) is definately possible.

[MomtoGiuliana]

I have been mostly better 10 years after a very bad bout with POTS that lasted about a year and included being bedridden and housebound. I am able to work full-time and pretty much have a normal lifestyle. I do have relapses that can last a day to a week, and my exercise tolerance never got back to what it was. But overall I am well.

[bebe127]

Davecom,

I think many get better. I'm so grateful for those that have gotten better and chose to stick around to encourage others (Momtogiuliana to name one of many). I agree with the statements above. Things do get better. I'm going on four years and things have gotten better for me. I don't know if it is the meds or what, but I do believe that once a person comes to terms with having a chronic illness (which can be very hard, but can be done) and begin to read their bodies and know their limits, things do change.

I truly believe that I had to go through a grieving period (sometimes I'm still in it), and had to tell myself...ok, this is me now, I'd better get used to it, and make the best of it, it really helped me out. When this all started for me, I didn't drive, rarely went anywhere, was in bed quite a lot and frustrated with dr.s. that didn't know about my illness or how to treat it. Now, almost four years later, I am driving, going out more and doing many more things. This is not to say that I "feel" well all the time, and I do force myself to get out more, but in the end, I'm happier for it, even if I have to pay for it later. Just the other day, I took my daught for a hair appt. and we went out shopping afterward. Four years ago, that wasn't even in the cards for me.

Remember, this is a process and it can be slow going for a while. It can totally stink at times (many times unfortunately).

It takes time. Sounds like you're in the hard stages right now: finding dr.s that can help, the right meds, etc. Chin up though because things do get better. I, for one would hope that if I ever fully or near-fully recover, I will continue to stay on this forum to encourage others.

Be well and good luck in all you do

Bebe

[davecom]

Thanks for the replies guys. Makes me much more optimistic than te thread on longevity.

[ShakeyTheOwl]

I enjoy this thread and concept. There are a few members here that posts and experience have inspired me as well what to choose for further research.

Its very overwhelming when first diagnosed. Not to mention the journey of getting there.

My oh, paf, and sfn was officially dx in February of this year. In a short time span have gone from almost bedbound to 20 mins on bike and a few other minor, yet big for daily living and quality.

Ive changed diet, and question the medication prescribed, and supplements.

Inspiration and knowing we arent alone to the path of better is a blessing here

[AussieOI]

Relax and Momto - what helped you to recover?

[Lenna]

My son is a lot better. Not totally, but enough to regain control of his life. He is just a few weeks away from finishing his freshman year of college where he lived in a dorm and excelled academically. This is a kid who couldn't make it to his high school classes for 3 years because he was too ill. So don't lose hope!

[lynnie22]

I would also really like to know what helped people get better. I know it can be individual, but it sure would inspire me to know. Thanks.

[MomtoGiuliana]

Time, primarily. I also took a low dose SSRI which I believe helped. Water and extra salt intake helped at the time and when I have relapses. Stepped up exercise, especially strengthening of the core I think helped and helps me.

[AussieOI]

I actually think that this is really important to have posts like this that show people can get better.

I was very ill with POTS last year bought on by a Liver/GB issue. I could barely function and had to take taxi's to and from work and was near the point of having to resign. Over the next few months my symptoms improved and I am feeling a lot better. I had a blip this year for abt 4 weeks (but not as bad as last year) and am now at the point where I can work full time, socialise after work etc I take Midodrine when needed.

I am trying to do more excercise and change my diet as I am a junk food addict and don't excercise much so I am hoping with these changes things will continue to get better.

I am certainly not cured and may always have some issues, who knows, but I am certain that many people can significantly improve. It can take ages and I appreciate that it is probably more difficult if you have underlying other conditions but it can happen for sure.

As you say Dave many people that improve are not on the Internet sites so in many cases you are probably not hearing all the success stories.

[Relax86]

I wish I could definitively answer exactly how I got better. But it seemed like hydrocortisone, salt, water, and Coconut water worked in the beginning. I wasn't seeing the boost of BP I needed to function so I added Midrodine for a short while. I went back to work before I felt well enough but I credit getting out of bed for recovery because it seemed like the more I stayed down the less my body could function up. I added no weight exercises in sitting. I usually felt worse after exercise but kept trying anyway. This flare came in Jan 2012, Started seeing some better days around April, weaned from HC and flared again in May...back on HC and got better by June. Over the summer was able to add more days of exercise and some light weight training. Added meditations, stayed on the forum for sanity and tried to make positive thoughts part of recovery. Today it seems like I have very different symptoms than a year ago. I'm not POTs but still have dysautonomia symptoms. My flares seem to be diet related. I didn't have food allergies prior to this thing but I do now. My body is very different today as compared to pre Jan 2012. It's just about wrapping my head around that, not living for my pending next flare. Correct any iron, Vit D deficiency, hydrate and listen to your body and the smart people on this forum. The more bloodwork I got to find answers the sicker I became. So I really consider testing very carefully. Good luck.

[Lenna]

I would also really like to know what helped people get better. I know it can be individual, but it sure would inspire me to know. Thanks.

My son participated in a study at Beth Israel Deaconess Hospital. What he learned through that study is that he is deficient in nitric oxide and therefore is vasoconstricted. So at that point he began to avoid vasoconstricting medications like Midodrine and Adderall, and starting taking Cozaar (Losartan), a vasodilator, to increase his blood flow. Although he still has POTS, he is very much improved. I wish we knew why he is deficient in NO, but maybe we'll find out someday and be able to treat the root of the problem. I guess if I could make one suggestion, it would be to participate in any studies that you qualify for; find out as much info as you can about your particular situation.

[jknh9]

I am much better than I was in 2011, when I was first diagnosed. Last year I was slightly better, but this year more so. When I was first very ill, my meds hadn't yet been straightened out and I think the Florinef made me feel worse. I took it easy and let myself sleep as much as necessary and began to take walks in the evenings when it was cool. In the beginning, I was doing very little besides laying on my couch and trying to eat. I bought a recumbent exercise bike on Craigslist and started doing that for 30-40 minutes a day, sometimes using 5-lb. hand weights at the same time to build upper body strength. Gradually I added in other exercise DVDs and drank tons of Vitamin Water and Gatorade. Every morning when I woke up, I would drink almost a whole bottle. At that time I was working from home about 15 hours a week. I got my meds straightened out for the most part, on relatively low doses of Zoloft and Wellbutrin, and I try to let myself relax when I'm feeling bad. I don't travel as much as I used to and I spend most of my time at home. I changed my diet to eat lots and lots of fresh vegetables, berries, bananas, beans, plain Greek yogurt, quinoa, and rice. I have really cut down on my sugar intake, too, and I take a vitamin B supplement. I also switched from artificial drinks to coconut water and more natural electrolyte tablets in water. In the past 6-8 months I have been working more on strength training and working up to jogging at the park. I have lost weight and have more muscle definition than I have ever had in my life, which is a nice bonus I exercise 5-6 days a week, doing a variety of activities. I push myself to do some sort of physical activity, even when I don't feel so great. Even slow movement is better than nothing in my opinion.

I am still not completely better. I still have long periods of daily headaches (coathanger area), I get dizzy a lot, I go through periods of insomnia and nausea, I can't get rid of the bloating, I can't stand in one place long, and I can't hang on to fluids very well. Going out for lunch and shopping with a friend wears me out and I have to pretty much lay on the couch the rest of the day. But still, comparatively speaking, I am doing much better than before.

[green]

I got better. Chronic dizziness improved to the point where I am now only dizzy in extreme cases. Chronic fatigue was reduced significantly so I am now working and finishing my Ph.D.

I often wonder how much of my 'recovery' was due to reducing how much cardio I do. I wonder and worry about it a lot, because it is so frustrating that I cannot exercise intensely more often.

[corina]

Happy to hear you got better green, and for taking the time to let us know! Best of luck on finishing your Ph.D.!

[writerlymom]

Just thought it would be nice to keep this thread alive. : )

[adigitalashley57]

Hello! I am also mostly cured. Its kind of weird to say actually. My being cured is very clearly related to medication. When i'm not on meds I become symptomatic again. Atleast that has been the case the last few times i have tried. So i am happily on 10mg of Lexapro and 100Mg SR of Wellbutrin. the Wellbutrin helps to keep my blood reassure up and stable and the Lexapro does the rest. The odd thing is the SSRi's for me almost always create a little bit of their own Dysautonomia but its so very mild i'd really rather deal with that than the extreme shifts my body does on its own not on anything. It keeps it much more predictable.

I first became diagnosed in 2009-2010 so I've been dealing with this for a while now so if anyone has questions of meds I've tried and other things feel free to ask, hopefully i can help!!!

And also i have been completely Gluten Free since about 2010 and that has made all of the difference in the world! I had pretty severe Neuropathic pain and weird tingling and numbness it random spots until i went on a GF diet and went on meds. I think that damage was done in terms of the nerve stuff so I'm sure the GF diet has helped a lot but its the combo of the two that really was a lifesaver for me.

keep this thread relevant i know it has helped me to read stories like this!!

[ramakentesh]

I range from 100% well to quite disabled at times. I had a period of complete remission for 3 years at one stage.

[Goschi]

Rama, so nice to hear that you do have times of feeling 100% recovered! Could you find out any causes for these times as well as for the times you get relapses?

Wish you all the best for the future!!

[Relax86]

I'm still better -- usually around 90-95%. I typically can figure a reason for symptoms to creep back up - not enough water, sleep, storm systems, menstrual cycle, over exercising. I can usually correct with Midrodine and or hydrocortisone although I haven't used either since March of this year. I've actually had some significant stressors that didn't seem to set me back but I've been very mindful during those times to take care of myself. Stay positive all!!!

[Newoldpotsie]

So glad I came across this topic, I was just about to start a new one.

This forum is great for info but it can also be a bit disheartening reading about unresolved symptoms and progressive illness of the posters. I know that posters on this forum are probably in the 25% that do not resolve or are newbies like myself and I know that potsies that have gotten better no longer usually hang around on forums but it's good to read that there are success stories. It's good for newbies to hear about actual cases and not just anecdotal resolutions from my doctor.

If anyone that has posted is still around, thanks for staying and giving us all some hope and a quick question, what are your ages? Not sure that I want that question answered though since I know the younger you are, the better your odds of resolution of symptoms and I am definitely out of the usual age range for even being diagnosed.

Wishing everyone well.

[YolaInBlue]

I intended to write when at least a year passes after my last episode, which was in December 2013, but maybe my story will give some people hope now. When I was first diagnosed I searched for recovery and improvement stories all the time.

I'm 44 right now. During my teenage years, from 15 to about 17, I had 3 syncopal and several pre-syncopal episodes, while standing for prolonged periods of time. My mom wasn't too concerned about it, so I never discussed it with any doctor and never had a diagnosis. I just tried to avoid those situations and I don't even remember a moment when it just stopped happening. At 19 I had rheumatic fever and was diagnosed with mitral valve prolapse. Because of my awarness about it, I was obessed with living a healthy lifestyle, good diet, fruits and veggies from my own organic garden, daily exercise, etc. I had 2 normal pregnancies. No problems, until summer 2011. I was picking up my daughter from school on a hot day and got very dizzy and pre-syncopal while driving. I had several episodes that day and barely made it home, cold, pale and dizzy. My friend came over and took me to ER. They couldn't find anything except low blood pressure and HR was in the 40's. I had a follow up with cardiologist, but gave up after feeling completely normal from the next day on.

In 2012, after a dental surgery and taking Advil 800mg I had a very scary episode of tachycardia, pre-syncope, frequent urination, trembling, dialeted pupils. I was 42 at the time. During the next month I developed almost all dysautonomia symptoms from the list. I started having episodes almost daily and sometimes they lasted for several hours. In between, I was thirsty, but couldn't hold on to fluids despite drinking bottles of water and pedialyte. I was dizzy after even the smallest meal. Unable to eat much I lost a lot of weight. Still, I felt bloated, cold all the time, dizzy. I could hardly get up and go to the bathroom. I had several doctor and ER visits, but no answers. My blood pressure and HR would vary from very low to very high for both. I would get presyncopal from taking a shower or lifting my hands up. After a while my kidneys started to hurt, too. My eyes were dry and painful, my mouth was so dry I could only eat moist food. I just want you to get a picture where I was at the time. After those ER visits I noticed that I felt much better on IV saline. But with no diagnosis I thought I was just going to die. Finally, I met a doctor in ER who admitted me to a hospital and said she was going to find out what's wrong. 10 days of all possible tests, a visit from a shrink, and they decided to take me of IV fluids and watch closely what happens. Within hours I started having symptoms and standing HR of 140, and heard the words dysautonomia and POTS for the first time. The next day I had a TT test, was given florinef and was told I will improve quickly. I was bedriden for the next 5 months, using wheelchair, very slowly getting more functional. I visited many doctors searching for the cause. I tried other meds and needed IV saline from time to time. I slowly strated to exercise (pushing with exercise sets me back). I was improving until summer 2013, when we were planning to go on vacation and I increased my exercise, trying to be more functional. I had another flare which put me in a hospital for a week. Slow improvement until December 2013, then a minor flare. I have been improving ever since. There are days when I don't have any symptoms at all, there are days with minor symptoms. I am a little symptomatic at night, on most nights, but able to fall asleep and just sleep through it.

The symptoms that still linger are heat intolerance, reduced sweating, sometimes low blood pressure (corrected with midodrin when needed), getting tired much easier than before, sensitivity to chemicals and medications, increased allergies. I also have some nerve damage on the right side of my body and most likely some neuropathy. My right pupil doesn't dilate in the dark as much as the left one and I sweat less on the right side, have less feeling in my right hand (I burn myself a lot while cooking).

I was told by Mayo clinic that my dysautonomia is secondary, but so far I haven't found the cause. I had several possible causes ruled out and many different theories from different doctors to work on. For now I am taking a break from doctors and focus on avoiding the triggers, and just listen to my body, rest when needed, exercise when I can. I make sure I'm hydrated. I have been able to lower florinef to 1/4 pill every other day. I go out when it's cooler. I can shop for an 2 hours without getting dizzy, I am able to do daily household chores. I was a fitness instructor and I am not able to return to my job, yet. But I improved a lot. I am able to walk 2 to 4 km a day and do some strength training on most days. Being on a gluten free diet also helped me. Right now I also take antiviral herbs for possible Lyme. I hope to report more good news in a few months.