Can Pots Really Get Better On Its Own?

[Nikki]

I was diagnosed in October of 2009, since October of 2008 I have seemed to have slowly gotten worse. Lately it's been the worst I've ever felt..I haven't tried many medications or anything so far..but I've talked to a few people dealing with POTS and they said when they were first diagnosed they couldn't even get out of bed. They couldn't stand up without blacking out..and years later they're able to do so much more than they thought possible and they aren't on any medications.

I guess I'm having a bad day and am trying to think positive and be hopeful that things won't always be like this..so I was just wondering if this is a common thing to happen, or if has happened to anyone on here?

[all4family]

Yes. I really believe it can get better on it's own. I am doing better. I believe that I am going to have full recovery. It just takes some time. Meds made me sicker, and the longer I am off them the better I feel. But that is for me. I posted"what's in a name", and it explains how I am doing better. Don't lose hope. Positive thinking can only help. And you obviously like to think positive as you are on here looking for positive input.

Suzy

[all4family]

Yes. I really believe it can get better on it's own. I am doing better. I believe that I am going to have full recovery. It just takes some time. Meds made me sicker, and the longer I am off them the better I feel. But that is for me. I posted"what's in a name", and it explains how I am doing better. Don't lose hope. Positive thinking can only help. And you obviously like to think positive as you are on here looking for positive input.

Suzy

[MomtoGiuliana]

Most patients improve with time--but this can be a long time. Average recovery time is 4 yrs according to my specialist. While I improved greatly, it was not steady, I had set-backs when I wondered if I really would get better, so I understand your feelings. And I still have relapses that can impair my function. However, overall I would say I am recovered, compared to where I was in 2002/2003.

[erikainorlando]

Please keep the good stories coming...I thought I was getting to where I could do a few things..so proud, then, well read my post from today. And it happens so quickly. All of a sudden whammy, I am incapasitated or at least today.

[Brye]

I'm an eternal optomist!!! If it can't get better on it's own, I'll do everything in my power to make it get better!!

I was diagnosed 2 years ago after baby #4. It has gotten some what better for me due to the medications. I'm still dependant on my meds but my quality of life has definitely improved since my meds started! I'm still not happy with my current level of functioning. I'm trying to gradually get back into shape and gradually increase my activity level!

Brye

[iheartcats]

I was diagnosed in January 2008...I'm better now than I was then and medications have really helped.

I need to get more active now and try to start exercising and building lost muscle. I think that is going to help me, at least that is what I tell myself!

I have a long way to go (I'd love to be off medications and feeling 90% of my old self without them) but I'm not there yet. But I hope I do get there!

[handmadebyemy]

My Doctor always reminds me that this may not be forever and "most" people with POTS recover completely. I'm not into taking lots of medications either ... have you tried compression stockings? They work great for me ... that and swimming. Before I started swimming I though that adding exercise to my weekly routine was the last thing I should do (I was already missing out on so much) but it has really helped. I found a hotel nearby that I can swim at during different days/hours for about $30 a month. I go 3 times a week and I feel better every time. Try it!

[yogini]

I am tons beter than I used to be and am in the process of weaning off my last med. I have tried a million different things to to get here. I changed around practically everything in my life - left a high stress, job, took up yoga, improved my eating habits, tried different meds and kept pushing myself. Some things worked better than others, but eventually I found the right combination - the best thing for me was starting yoga, then Paxil. After the Paxil I was finally able to stop my beta blocker which was making me exhausted. Then I was able to build on my physical strength and activity level. I think my POTS was predisposed to getting better, but I think the recovery could have taken much, much longer if it wasn't for the hard work So hang in there, keep trying!

[icesktr189]

after two years from my POTS crashed i was 70 percent improved with only taking an SSRI. But this pregnancy has set me back a lot.. i think its going to take time for me to get back to my orignal POTS.

[Guest tearose]

It has been 19 years, that is nineteen years of hoping...I have also passed the 50 year old mark and I still have POTS. I still hope for better. I relapse and remit and keep hoping...

I learned to do the best I can and focus on living life with the energy and strength each day brings.

There were months that felt nearly normal and there were months I thought I would never be able to even drive again.

I have been able to manage fairly well with my treatment plan, but I had to learn to take one day at a time. I make plans and allow time for recharging my energy after activity.

All it took to make things slow down recently was trying to manage the cold winter and here I am back in slow/careful mode counting my precious energy points again.

I have learned to be careful about everything.

Still, I cannot figure out why sometimes walking a mile will be wonderful and other times I can't manage it without trouble. There are times a salad is exactly what I can eat and other times it will ferment and come back up the next day. I can do some housework for awhile, nearly on a regular basis and then one day, for no apparent reason, I am unable to even make my bed without running into trouble with symptoms.

I can manage the cold usually, with heating garments. I can manage the heart rate with compression, some caffeine, some hydration and electrolytes. I have other physical challenges too, I have lymphedema, partial BBB...

(I think on a deep level of my understanding, in my body, I feel it has something to do with the mitochondria but that is just an inner intuition. Also, I have odd shaped red blood cells, lymphedema and who will ever take the time to put all the challenges together and figure out how to help one person? I just do my best.)

That is all any of us can do really. We just do our best.

[yogini]

I have had POTS for 6 yrs, by the way. I know a couple of years (or a even couple of months) seems like an eternity, but unfortunately it isn't in the POTS world. I would say the first year was the hardest, and after that things steadily improved apart from a couple of glitches in the road. But as tearose's post shows, you can have a good and meaningful life even if you don't improve.

There was the article in the last newsletter about the stages of chronic illness, which I thought was so great. I think the hardest thing to get to the point where you accept the POTS, are not so troubled by the ups and downs, and start figuring out what you CAN do to be happy.

[Nikki]

Thanks for all the responses everyone. It's really uplifting.

[janiedelite]

I probably have a genetic component to my POTS, as my mom also has small fiber neuropathy. So I might always struggle with it to some degree. However, I'm doing much better than I was a year ago now that I'm finding medications that really help me (carvedilol and neurontin) AND I've been diligent with my fluids, salt intake, compression and exercise. Also, I've recently posted on the major construction we've done to our home when we found a huge black mold infestation 12/31/09. Since I've been out of the house, my energy level has really improved and just seems to be getting a bit better each day even!

I still can't work, primarily because I still have to lie down every hour or two to rest and also because talking still makes me feel quite sick. But I'm hoping that removing all of the mold from our home will help me improve enough to work again. Either way, I'll happily take any improvement at all!

[Jan]

The first two years were the worst for me and I believe it was because I tried to "take it easy" when I didn't feel well.

The best thing you can do is exercise. On bad days, make sure you at least sit up in a recliner. Staying in bed or lying on the couch will make you worse.

Like the other people said, it is sometimes two steps forward and then a step or two back. It is hard, but try not to let the set backs make you depressed. Just hope that tomorrow will be better. Improvement can take years.

I would suggest keeping a journal about what your day was like. If you read back in a year, you may see more improvement that you realized.

Believe that you will get better and that set backs are part of the illness. Now go eat something salty.

[masumeh]

prognosis of full recovery is usually related to etiology, how exactly you developed POTS. some people get POTS from underlying neuropathy which progresses or cannot be corrected due to trauma or genetic factors...so their prognosis is not hopeful. but many people acquire POTS after infection or during a growth period, and they have a high likelihood of recovering spontaneously (i.e. without medical intervention).

if the etiology is neurological damage limited to the Autonomic Nervous System, where the source of the damage can be halted, then those are peripheral nerves, which (unlike central nervous damage) can heal and do heal over about a 4 year period.

in my case, I recovered a lot in that 4-year period, but I was still only semi-functional after that, until I got the proper medical intervention. I got POTS suddenly in 2002. I recovered a lot between 2003-2006. In 2006 I was diagnosed and started medication (mostly Midodrine). In 2008, I stopped the midodrine and started other forms of treatment. Now, 2010, I consider myself fully recovered. I'm on gaurd, however, because I know a relapse is still possible.

Good luck with your recovery! I'm sure it'll get better.

[Notgivinup]

prognosis of full recovery is usually related to etiology, how exactly you developed POTS. some people get POTS from underlying neuropathy which progresses or cannot be corrected due to trauma or genetic factors...so their prognosis is not hopeful. but many people acquire POTS after infection or during a growth period, and they have a high likelihood of recovering spontaneously (i.e. without medical intervention).

if the etiology is neurological damage limited to the Autonomic Nervous System, where the source of the damage can be halted, then those are peripheral nerves, which (unlike central nervous damage) can heal and do heal over about a 4 year period.

in my case, I recovered a lot in that 4-year period, but I was still only semi-functional after that, until I got the proper medical intervention. I got POTS suddenly in 2002. I recovered a lot between 2003-2006. In 2006 I was diagnosed and started medication (mostly Midodrine). In 2008, I stopped the midodrine and started other forms of treatment. Now, 2010, I consider myself fully recovered. I'm on gaurd, however, because I know a relapse is still possible.

Good luck with your recovery! I'm sure it'll get better.

Would you be so kind as to elaborate on "other forms of treatment"?

[masumeh]

prognosis of full recovery is usually related to etiology, how exactly you developed POTS. some people get POTS from underlying neuropathy which progresses or cannot be corrected due to trauma or genetic factors...so their prognosis is not hopeful. but many people acquire POTS after infection or during a growth period, and they have a high likelihood of recovering spontaneously (i.e. without medical intervention).

if the etiology is neurological damage limited to the Autonomic Nervous System, where the source of the damage can be halted, then those are peripheral nerves, which (unlike central nervous damage) can heal and do heal over about a 4 year period.

in my case, I recovered a lot in that 4-year period, but I was still only semi-functional after that, until I got the proper medical intervention. I got POTS suddenly in 2002. I recovered a lot between 2003-2006. In 2006 I was diagnosed and started medication (mostly Midodrine). In 2008, I stopped the midodrine and started other forms of treatment. Now, 2010, I consider myself fully recovered. I'm on gaurd, however, because I know a relapse is still possible.

Good luck with your recovery! I'm sure it'll get better.

Would you be so kind as to elaborate on "other forms of treatment"?

Well, I wrote a full description some place on this message board. But briefly:

1--NO medication

2--high antioxidant diet (no diary, almost no sugar, low carb)

3--avoidance of migrane triggers (caffiene, sugar, noise, bright lights)

4--low stress

5--lower respiratory rate as much as possible (resting and active) * this was very important

6--phsyiotherapy focusing on strengthening leg muscles and building cardiovascular fitness (started with 10 minutes daily on stationary eliptical bike, worked up to 20 minutes daily, then started outdoor activities). * this was also essential

Lots of stretching with the physiotherapy...stretching is important to preventing autonomic reactions. I couldn't have exercised the next day if I didn't stretch the day before.

I had a couple relapses around menses and flu periods, but very brief and not fully flare-ups. I got the flu again last week and didn't have any faints from it so far. I was able to got back to work. Technically, I still have tachycardia and bp fluctuation, supposedly telltale signs of POTS, but I have normal energy and cognitive function.

[ByteMe58]

No Dairy, I think that's one of the first times I've seen that mentioned, but I found that cutting back on the milk really helps too. Is that something you read somewhere? I used to love a big glass of chocolate milk in the morning and one at night after a workout (before POTS).

Frank

[Guest tearose]

Since I had to get so "intune" with my body and POTS has not gotten better since 1991...

I sense things that regular folks don't.

I am learning about "sensitive" people from a mediumistic viewpoint.

Has anyone else taken the challenges of unresolved dysautonomia and become a medium?

Maybe we are all misdiagnosed, untrained Mediums?

Wouldn't that be wonderful.

[Kitsakatsa]

I noticed improvement in year 4 and then not since then.

POTS is better for me though because I believe I am on the right combo of meds, at the right amount and at the right time of day.

I think POTS getting better is a combination of things. I think I am getting better at being a POTS patient.

For example, I am extremely regimented.

I take meds at same time, hit the hay at same time, exercise at the exact same time a day, etc.

I know when I can eat healthy stuff. I know when I need sodium foods.

I know when to stop, I know when to push myself.

I know when to leave the office.

I know when I have to cancel an activity and when I do- I'm no longer hard on myself.

I don't apologize too much and I don't volunteer too much.

I'm having an easier time mentally.

I'm discovering how to stand up for myself.

I figure because I've stopped medically improving, I need to start improving what I do.

It's encouraging to hear these success stories here. We know the real success stories are the ones we are not hearing- the people who are no longer posting because they are no longer struggling.

We have all the reason in the world to have all the hope in the world.

Kits