Better, Worse,same Or Cycle

[mountain girl]

I am currious how many people with pots get better either with meds or with more natural treatments such as high salt or gatorade , how many feel they decline , stay the same or symptoms that cycle. My experience so far after about 15 months of pots is the meds and gatorade help some. If I would say I cycle, it is a very short cycle of a day or two of feeling pretty good, then back to not. I am able to work 3-5 days a week but it is often too much but I feel i need to as long as I can. My heart rate and b/p stay fairly normal on meds, I just get so tired after being up a few hours I feel like I have to lay down. Often if I work an 8 hour shift I have to lay down in my vehicle on my half hour break. Just sitting down does not help enough. Overall, I would have to choose staying the same since diagnosis and going on the meds and gatorade, better than before diagnosis and meds. I just wish I could continue to progress to feeling better and doing more than working. I have someone to clean my house and rarely cook or bake anything like I used to. I am 46 years old. I also have adies pupil which is related to autonomic nervous system problems, so my left pupil stays dialated and it seems my eyes tire easily too. I have read one piece of info that said 80 percent of pots people get better, and 60 percent of pots people get some better but never fully recover. My dr made sure I knew there is no cure, only treatment of symptoms, I guess so I would know what to expect. Current meds: Bystolic 2.5 mg @ 0800, Florinef 0.1 mg @0800 both for POTS, Remeron 30 mg @ 2000 for chemical imbalance depression, Buspar 10 mg. @ 0800 and 2000 for anxiety, Restoril 30mg. @ 2000 for sleep, Ativan 1 mg once a day as needed for chest tightness. Thank you for any info. Becky

[potsgirl]

Hi Becky,

You may want to do a survey on this - multiple choice with questions...I am your age, and was diagnosed with low flow POTS/OI a little over two years ago. Three years ago, I was diagnosed with cardiomyopathy and congestive heart failure, so I wear a pacemaker and have that problem also in the mix. I can't tolerate Florinef or Midodrine, so eat lots of salt, drink tons of water, and electrolytes (Nuun). I feel better than I did when I was first diagnosed, but not by much. I'll have a good day here or there, but right now I'm in a long 'down' cycle.

I think you'll find that there's a lot of variation between all of us. I think that young adults are expected to improve at a much greater percentage than adults. Also - your statistics are a little confusing. Could you please clarify? Thanks!

Cheers,

Jana

[mountain girl]

Hi Becky,

You may want to do a survey on this - multiple choice with questions...I am your age, and was diagnosed with low flow POTS/OI a little over two years ago. Three years ago, I was diagnosed with cardiomyopathy and congestive heart failure, so I wear a pacemaker and have that problem also in the mix. I can't tolerate Florinef or Midodrine, so eat lots of salt, drink tons of water, and electrolytes (Nuun). I feel better than I did when I was first diagnosed, but not by much. I'll have a good day here or there, but right now I'm in a long 'down' cycle.

I think you'll find that there's a lot of variation between all of us. I think that young adults are expected to improve at a much greater percentage than adults. Also - your statistics are a little confusing. Could you please clarify? Thanks!

Cheers,

Jana

Thank you for your response. The statistics did not make sense to me either unless pollers answered yes to more than one question meaning 80% of people improved period and 60% said improved some but not to pre pots functioning but I noticed that does not add up to what you would think being 100% in totals. It went on to say a small percentage of people were disabled to the point they were unable to work.

Yes you are right there is alot of variation. I like your idea to try specific questions poll style.

[iheartcats]

I'm probably 50% better on my meds (they are in my signature at the bottom). Now that I have moved, I'm hoping my new doctor lets me stay on them as they really help me function.

I should drink more. That does help. I go back and forth with getting enough G2/Salt and should focus on keeping that steady. It probably helps 20%.

I'm hoping I'm stable enough to get a job...I need to work for a while (and like others day...while I can. I'm not great, but I'm OK so just as well take advantage of that.). I'm better not working...I can lead a more normal life. When I work I'll have to cut down some extracurricular stuff, I'm sure.

I've been fairly stable except for some new muscle/body aches I can't get my head around the last 6 months.

I have my bad days and my better days, of course, depending on the POTS symptoms, allergies, weather, etc.

[ramakentesh]

Doctors Ive spoken to say that the most common presentation is a waxing and waning presentation - where patients have period of being ok and others where they are symptomatic.

Presentations seem very different for everyone and as there may be quite different mechanisms behind POTS, what applies for one may not for the other.

One study suggested that patients were more likely to improve on beta blockers than on alpha agonists, but other doctors say that the only thing that improves POTS is exercise.

In my experience so far, I go through periods of nasty crashes that gradually improve and once i get out exercising it tends to be much better - my last period of relative remission where i waxed between 0%-20-30% symptoms was 3 1/2 years - during this time I was running regularly - but i crash after airline travel so im trying to avoid that in the future.

[Guest tearose]

I can't take any meds. I do all behavior modifications. Meditation, compression, hydration....

I call it relapsing and remitting. I have had POTS since 1991 and have lived through the good and bad and the neutral. There isn't a pattern except for a general better management seasonality I notice. Spring and Fall are my best times of year because I function best between 65-75 degrees.

[mountain girl]

I can't take any meds. I do all behavior modifications. Meditation, compression, hydration....

I call it relapsing and remitting. I have had POTS since 1991 and have lived through the good and bad and the neutral. There isn't a pattern except for a general better management seasonality I notice. Spring and Fall are my best times of year because I function best between 65-75 degrees.

I notice that Spring and Fall seem to be better for me too. I was actually glad to see summer ending which I never thought I would say.

[mountain girl]

Doctors Ive spoken to say that the most common presentation is a waxing and waning presentation - where patients have period of being ok and others where they are symptomatic.

Presentations seem very different for everyone and as there may be quite different mechanisms behind POTS, what applies for one may not for the other.

One study suggested that patients were more likely to improve on beta blockers than on alpha agonists, but other doctors say that the only thing that improves POTS is exercise.

In my experience so far, I go through periods of nasty crashes that gradually improve and once i get out exercising it tends to be much better - my last period of relative remission where i waxed between 0%-20-30% symptoms was 3 1/2 years - during this time I was running regularly - but i crash after airline travel so im trying to avoid that in the future.

I guess that is what is so frustrating for me is the not knowing and the fact that everyone is so different makes it hard for drs to treat.Thank you for your response, it was helpful.

[Rachel]

You may get an unbalanced picture from replies here. There are a lot of people with POTS who do improve with treatment, but those who improve aren't as likely to stick around support forums. It's those of us who are still sick that tend to come here.

For me personally, treatments do help some, but overall my health continues to decline.

Rachel

[janiedelite]

I think I've stayed about the same, although I function better than I did when I first got sick because I know how to help my body now (fluids, salt, etc). I have flares of various symptoms that can put me in bed for days at a time still, but generally those days are fewer than the ones where I can do things.

[mountain girl]

You may get an unbalanced picture from replies here. There are a lot of people with POTS who do improve with treatment, but those who improve aren't as likely to stick around support forums. It's those of us who are still sick that tend to come here.

For me personally, treatments do help some, but overall my health continues to decline.

Rachel

You are probably right, I guess I was just wondering how likely I am to improve or decline, but like so much of this syndrome, it is really unknown

[ramakentesh]

Part of the reason it is so hard to treat is because they dont really know what is causing it - most of what they know currently is based on equivocal research and guesswork, so in the future when they understand the condition we may see large advances in treatment.

[erikainorlando]

Is there really research that suggests that only a small percentage are so disabled that they can't work?? I am happy when I can go run errands for a couple of hours...I just wen tout and got my hair done and I am sick sick sick....................hmmmm

But I saw my electrophysiologist today and he said that he didn't believe that my age (46) was too much of a variable. He really gave me hope that this will improve. Although it has been a year since I got sick now and I am not sure I am that much better. Beta blockers help a lot...but I

still get so sick from activity.

Erika

[fighting4health]

When I exercise often and stick to a healthy low sugar, high salt diet I feel so much better. One of my biggest challenges is to slow down or stop when I start feeling bad. If I push myself I pay for it later for a long time. If I rest when I should I stay pretty stable every day.

[ramakentesh]

Actaully research by Baker Institute said that something like 25% were unable to work.

[mountain girl]

Actaully research by Baker Institute said that something like 25% were unable to work.

I would believe that 25% figure because I myself struggle with how long I can continue pushing myself to work, but as with many things with pots, I am sure research figures vary. Thank you for your statistic, I always find them interesting.

[potsgirl]

Hi Becky,

I have also read that about 25-30% of people with dysautonomia can't work. I would love to go back to my old job - I loved it and miss it every day. I had to leave shortly after my POTS diagnosis about 2 years ago. Unfortunately, I have not gotten better over these past two years, but I can't tolerate either Florinef or Midodrine. I'm trying licorice root next.

Take care,

Jana

[poppetkazutaka]

I have good days and bad days. On the good days I frequently say, "I'm so going to pay for this later!" But I live for the days where I can clean my room, shave my legs, go shopping, and wear myself completely out due to boundless energy and health. Even if it does mean the next week is going to be spent in bed when I'm not dragging my behind through work with the help of prescription drugs.

Though it seems for me the worse health comes when the seasons change, once the cooler weather comes I'm better. Hot weather hampens me and sudden changes (which are frequent here) from cold to hot to hot to cold make me have issues. It's a struggle but one I've learned to deal with on a day to day basis. Thankfully, I'm still able to work, but I foresee a day when I won't be able to.

I also foresee a day where I might be able to run people down with a powerchair but I don't know, that might be wishful thinking. XD

[futurehope]

I don't have flares and remissions. I have a dysfunctional ANS all the time. I believe that it is my management of this condition that determines how I feel.

What do I mean?

I consciously choose or forego activities depending on whether I think I can handle it, or, conversely, it is too much for me.

I pace my days.

I sit whenever possible in a reclining state.

I go out and do errands.

I exercise.

I basically respond to my own good or bad management of this condition.

I do not believe that this condition itself changes daily for me.

For example, if I am ill, I know that I cannot handle things because I respond poorly to fevers and illness.

[runningshoe]

My three year anniversary of my first pots episode is around the corner. I do not believe I am better. My cardiac symptoms are managed and I don't get a secondary stress reaction any more because I know what I am dealing with. I function on a day to day basis. Some days I feel 90% some days I feel 40% (like I used to).

You might want to think I about he sleep meds like the ativan - can make you tired and lethargic and add to the lack of energy problem. It is a lonely road sometimes when you feel yucky and have to muster up the energy to do the things you need to do - but we are here in sympathy!

[kayjay]

I am one who cannot imagine working at this point. I was a teacher and I have been slowly sorting though my things and giving them away. I have an M.Ed in exceptional children and I taught special ed and early childhood. Moving around, bending over, jumping all was a part of doing my job well. I am certified to teach k-12 but I have too much brain fog to even think about teaching older children- I tend to speak and spell like a preschooler!

I think the work thing must depend on what kind of job... is there something I can do laying in bed that requires no thinking?

I am worse now but drug reactions caused flares for me. Also I think my body just has gotten worn out. I went for ten years undiagnosed and had 2 children to care for. I pushed and pushed and just kept going. I wonder if i would be in better shape now if I hadn't had such poor medical care for so long.

Also I was 25 when I got sick, now I am 36 I think with age it can be harder to bounce back in general. I feel like I am 90. Anyway sorry that I rambled on.. I am so sad to not be teaching because I was a very good teacher.... I don't know what else I could do?

Right now my big goal every day is to help my children with their homework and to prepare a healthy dinner for them. I am thankful when I can do that. Short story long I cycle and get worse over all.

[ana_22]

pretty much the same. im struggling to function most days (wash, dress, eat) i can walk tiny distances. im starting miodrine soon hopefully it will help with something.

[ramakentesh]

I can work but ive had time off - lots of it.

[ramakentesh]

'I don't have flares and remissions. I have a dysfunctional ANS all the time. I believe that it is my management of this condition that determines how I feel.'

Its funny how we have to learn how to manage a condition when we have no clear idea of its primary cause. Each of us seem to find our own ways I guess.

[futurehope]

Rama,

By using the word "manage", I mean that after about 7 years of this, I am familiar enough with my body's response to different situations. Though I do not know exactly the root cause of all this, I do know my response to stimuli.

Some things I've learned on this forum. Others by trial and error.

For example:

I know my response to sitting and standing

I know my response to compression hose

I know my response to excess adrenalin caused by too much stress

I know my limits on daily activities

I am aware of my lack of stamina

I know my digestive tract responds to any changes be it food choices or a vacation

I know I should not "push" through fatigue like normal people

I know enough (even though I am always looking for root causes in case they can be "fixed") to manage

I could go on but you get the picture.

It is important to emphasize that I've had much testing done for "root causes" and that alone gives me confidence that I am doing my best in a difficult situation.