80 Percent Recovery? :p

[Shimoda]

On the Mayo website it states that in adolescents there is a 80% full recovery rate from POTS. Did they just pull this number out of nowhere, or is it actually based on science in some way? Over two and a half years after acquisition of POTS, no improvement. Am I just unlucky or are they just trying to make me feel better?

Also, I'm now 18, so has that ship passed? Is there no hope now that it will just "go away"? Just wondering, thanks.

[MomtoGiuliana]

My specialist told me there is a high rate of recovery for all ages, but higher in younger people than in older people. I was very sick with POTS age 33/34 and after a very bad year, recovered to a huge extent and now have relapses, but am generally in good health and function.

He also told me that the average POTS patients is sick for 4 yrs before "recovering".

I don't know what studies this is based on--or just his experience with hundreds of patients over the years.

I see no reason for you to give up hope!

[Christy_D]

I've read that it can takes teens into their early 20's before the recover. My son has been sick for a couple of years now(daily for 1 full year now). He is going to be 15 on Thursday. I hope it doesn't take that long.

[lieze]

I read it can take 2-5 years for post viral POTS to recover on the internet.

That seems like a long time when I read that my heart sank but I guess the good thing is recovery is possible. I think the most important part is to not give up hope and keep continuing to exercise whatever that is for you. Every where I read it emphasizes the importance of reconditioning the body. For some it maybe just sitting up or moving your arms and legs while laying down and for others I see they are actually able to do aerobics? or go to the gym. I'm not on that level yet but I can see how very important activity is.

lieze

[Maxine]

Hi-----------------I know they say younger people have a better chance of recovery then others, but it can take a while-----sometimes 5 years. I guess it depends if the POTs is primary, or it's secondary to something else. My POTs is secondary to my EDS(ehlers danlos syndrome), and spine instability at the cervical region. http://www.ednf.org/

Some people with POTS have had great experiences at Mayo, and some have come back very dissappointed. I don't think they should base recovery like this--------as there can be so many different variances of POTS/dysautonomia.

Don't give up. Recovery could take loger, or it could wax and wane. A lot of people start out with quite a POTs crash, then improve, but don't return back to where they were before POTS. For some who receive good treatment can lead almost normal lives. Being put on the right formula of prescriptions can be the key in feeling better. Some people do well just with salt loading, and keeping their fluids up.

If possible, exercise is important to keep muscles fit to prevent deconditioning which can make things worse for people who have blood pooling and poor vascular tone. If you can't tolerate gravity, then exercise in the pool is an option since gravity isn't an issue there.

I know I've had POTs my whole life, but my symptoms were mild until I reached my 40s. I didn't know what I had until my 40s. Up until then my symptoms were just tachycardia, and it was controlled with beta blockers. For many years I didn't need any meds. My first symptoms appeared when I was 22, and back then I was diagnosed with MVP ( mitral valve prolapse ), but since then have been told I do not have MVP. I did not need medication from age 22 to 1990. In 1990 I wasn't able to control the tachycardia without beta blockers. From 1990 to 2000 I felt good on the beta blockers for the most part, and I was able to have a normal life exercising, working, ect.

I hope this helps a little. I hope you have improvement with your symptoms soon. I know I did for quite a long time. I'm not bed ridden now, but I'm quite limited, and now on disability. I have other problems in addition to my POTS though. I fight to stay out of a scooter or wheelchair, but at some point I may have to deal with that in order to go to places like the Zoo, or an amusement park. I can't walk long distances without symptoms----severe weakness, near syncope, and heart flips flops. We went to the Zoo in Dec. to see lights before Christmas, and I made it, but barely.

Take Care,

Maxine :0)

[Shimoda]

Thanks all, that's encouraging. Does anyone know if the recovery rate worse if it isn't post-viral, because mine was post-trauma?

I've been on the betas, and they've been a blessing. I guess I feel like I'm "functioning" because I'm forced to do things and go to classes. But I think it might be just be because I'm young. I'm worried that as time goes by, my body won't be able to take this as well.

Maxine, if you don't mind, specifically what was your underlying spinal problem? Also, how did you get it diagnosed? I'm almost certain that my underlying issue is a problem with my top vertabrae, but my doctors didn't try too hard to figure it out.

[bizbiz]

I got sick 17 months ago after the birth of my first child, and while I am no where near back to normal, I have improved a lot since I first got sick. For me, getting better has happened so slowly that I havent even noticed it until I look back at this time last year and see how bad I was then.

Also, I'm not sure if you are familiar with The Wiggles, but the one member of the group who got sick with dysautonomia apparently had quite a lot of improvement around the three year mark.

[Maxine]

Hi Shimoda,

It's hard to say what my underlying spine problem is, but from what I understand the EDS (ehlers danlos syndrome) is what caused my spine problems.

I think they got worse from a car accident I had in 1977. I was the passenger in a small car (yup, it was a ford pinto---lol) . A man with a large Ford LTD turned in front of us. I didn't have a seat belt on, and my head hit the windshield straight on-----the top of my head. (of course I wear a seat belt now----and have since that accident)---I was a dumb 18 year old. It was soon after this I noticed a lot of neck pain, and headaches in the lower part of my head. Docs blew me off over the next few years, but finally one doctor found a healed over fracture through a open mouth x-ray many years later. The fracture was a compressed fracture, and it was small. As time went on, the DAILY pain subsided, but my neck was never really right after that, and I still had intermittent pain.

In late 1982 I went to a chiropractor to have my neck manipulated. By then I had a 5 month old baby boy. It was a couple weeks after this I noticed panic attack with tachycardia----heavy thumping heart beat. My mother gave me some of her phenobarbitol back then, and it worked like magic on the attacks----like they never happened. I was concerned about addiction, and weaned off them in a few months. My "attacks" didn't happen again until 1990, but I was diagnosed with MVP along the way. Nothing about my spine was brought up by me, or any of the doctors I saw back then. My health crashed badly in late 2000. Still nothing about my spine was brought up, and any pain I had was just something I wrote off as being caused by the car accident in 1977.

After Dr. Grubb diagnosed POTS in 2001, I told him I had neck pain that sometimes spread to my shoulders and right arm. I know he's not the right doc for this, but I ust brought it up in passing. I asked him if he thought I should have an MRI. He wrote an order for one, and it turned out I had a herniated disc. He suggested that I have it checked out. Local docs were dismissive, and said it was nothing. However, numbness in my arm, and further pain pressed me into seeking another opinion with a neurosurgeon who was familiar with POTS, but I had to travel to Chicago to see him.

I sent my MRI to him first, and he said it looked serious enough for further testing. I went to Chicago for two days of testing, including another MRI and a CT scan. The surgeon came into the examining room and said I had a very bad neck. He said not only do I have two badly herniated dics, but I had a small poster fossa--(lower skull), and congenital cervical spine stenosis. We scheduled surgery for the herniated discs for the following month. He said another car wreck could paralize me.

It was from this point on that I ended up with many other problems with my spine-----as you can see in my signature line. The cervical/cranial instability is the focus right now, and there's also a badly desiccated disc in thoracic spine on the t-8 level. I have a possible vascular issue from a missing left vertebral artery on the left causing possible vascular congestion on the right due to the right side trying to compensate for the left missing artery. I recenly noticed a bulge in the back of my throat, and the little bony areas behind my ears are also painful. I'm getting headaches on the right that are thumping, especially when I move my neck, or when I walk. It doesn't take long before I'm up in the morning for the pain to start up.

I got diagnosed with EDS after I was told about my spine problems. The conclusion is that my EDS is causing the whole mess. The EDS causing unstable joints and ligaments, and poor vascular tone-----weak vessels. I have brain stem compression from the cervical/cranial instability causing pannus tissue growth on the odontoid bone covering the first two vertebrae-----this in turn presses on the brain stem anteriorly. There is an orthopedic surgeon watching things, and it's looking like surgery my be the only option to fix this eventually. However, I have the vertebral artery issue also, and a neurosurgeon needs to address this if this is even an option. First we have to get a surgeon to understand this isn't normal................obviously there's an issue as the vertebral artery on the left is missing on my brain MRAs, but the ultra sound picks it up in my neck. NIH said it's clearly missing in the brain-----but what happend to it between my brain and neck..........hmmmm......could this be causing my headaches, slurring speech, blank memory, clumsy hands, difficulty in walking, numbness, twitching, and other issues????????????

Upper spine compression can definately aggravate POTS, or even cause it. I must caution you that even people diagnosed with upper spine problems who have had surgery still have POTS, or autonomic nervous system dysfunction of some form. Some have shown improvement to the degree of leading almost normal lives. For people who have EDS, spine problems are only part of the problem. Not everyone with EDS has spine problems, and the poor vascular tone caused by EDS causes orthostatic problems due to blood pooling in lower limbs.

The best thing to do is have a good POTS/ANS specialist. If you think you may have a serious spine problem, see if your doctor will order an MRI to rule it in or out. Seek more then one opinion on this. Local doctors blew me off, and both my POTs doc and I thought the problem was more serious.

Good luck to you---

Maxine :0)

[bkweavers]

My daughter became sick 2 months before her 11th birthday. Dr. Grubb and Beverly told us that the younger a person is when they get POTS, the better the recovery. I think that has just been what they've seen from their experiences with their patients. They also told us a 5-7 year time frame of recovery. We saw Dr. Grubb last July and when we mentioned the small improvements our daughter was making, he said that was encouraging. He said my daughter is in the 80% who will recover because she has been improving, rather than continuing to slide backwards. I don't think that means that she will never have a down time but overall, things are getting better.

I guess the thing to remember as well is that everyone is different. Some may never be back to what they were before the illness, some tend to go thru times of feeling great and then have a backslide again. The best thing to do is take care of yourself and try not to worry what may be in the future. I know as a mom, that's easier said than done but I've tried very hard to not focus on the future too much and focus more on the now. I'm also trying to feel hopeful and I get that from my daughter. She is so upbeat and hopeful that she will get better and I just have to believe that! A lot of praying definitely helps too!

Brenda

[Tammy]

I'm going on my 5th year and compared to the first two years and off/on the third and fourth year, this one is getting a 'little' better, so I'm hopeful that each year will get a little better, but my neurologist said that POTS is lifelong, no matter how you acquire it as it possible that changes your DNA in a sense. He stated that stressors such as menopause, and other physical changes /health issues will always flare symptoms - so I'm not looking forward to reaching those years which are at least 10 years away for me, but can't think about it as a lot can change in that amount of time. Mine came on after a really bad virus, so I guess I should fall into those that recover '80 percent', but I've never had a doctor tell me that I will ever fully recover, but may at times function better and then at other times I won't function as well. I guess I just take it hour by hour each day and accept that this is now my life, because fighting it hasn't made things any better and I was more frustrated before I gave in to this new life.

[MightyMouse]

Mine is a result of a genetic defect, and so it will never get better. I'm okay with that as long as I don't get too much worse--I've been able to hang in there with working for now.

[joy]

I was told to expect it to take up to age 25 to recover

[coloredblood]

Most boys get better. The girls are not so lucky. the split is huge between female and male recovery.