StandUpSitDown

Hi - I have moderate anhidrosis with my AAG. When it comes my turn, I plan to get a covid vaccine - but I admit to being worried about the second shot - where some get fevers. I haven’t had an illness with a fever in years. What happens when you get a bug and get a fever, but have some trouble sweating? I am suddenly rather nervous about this, and I don’t know if I even should be nervous. I know I can talk to my doctor but I was wondering if any in the group had a thought.

thanks!

I've been diagnosed with POTS since 2005, which was better diagnosed as AAG in 2011.

I am lucky. I have an extremely supportive wife, a job that I can do leaningback with feet up, etc.

I have learned to live with the difficulties just like most of you.

Yesterday, my wife drove us an hour to a planetarium show. My symptoms decided to flare up just as we got there.

As I said, I have an amazing wife. But I don't think I've been this blue about my condition in years. Amazing how I can work through day after day of limitations, and it's something absolutely trivial that gets me down. 

So the past four years (but last year), my wife and I have visited Disneyland once a year as sort of a break from everything. It's a 6 hour drive from our house, she does the driving.

I rent a scooter when there, and the past three times it's been wonderful. I go about on the scooter, from place to place in the two parks here. In the summer of 2011, I even took it down the street to the Anaheim convention center (almost a mile from our hotel), to go to see a day of a Disney fan conference there.

I loved how the scooter made me feel so very mobile. It was GREAT.

This time the scooter is making me nauseous as heck. Since visiting last time, my doctor changed my beta blocker to one that is far more effective for me (from propranolol to Nadolol), so I don't know if that's causing it.

But I am feeling VERY defeated. The scooter was this way I could feel 'somewhat normal' because I could walk with my wife to various rides - I couldn't ride the swoopy/faster ones, but I could go with her out in the parks.

Now I can't even just mosey along the parks enjoying the festive atmosphere in the people.

I started with POTS in 2005; in 2008 (December) I was able to return to visit, and that was SUCH A SUCCESS for us. We both felt really good about it. Discovered last fall that I have the autoimmune one (titer of AchR-G of 0.08-0.2, fluctuating).

Now I feel like this little joy we had found after years of trying to taken away again.

I know, I know - we're lucky we can go here at all, and I have an amazingly supportive wife.

But I felt so dejected that when she stayed down in the hotel lobby to visit a shop, I just went to the room, and for the first time in a long time, just plain cried.

I am so so so very sick of this. Sorry for complaining.

Let me turn the tables a bit, as a guy with POTS.

If your husband were as sick as you are - think deeply about this for a bit - how do you think you'd be dealing with it? If he were unable to work; if he needed help with so much. Imagine if you were a guy - and you talk about the lack of sex drive. Imagine being that tired, nauseated and dizzy, and being a guy.

I am lucky. I work in a field (computer programming) where I can work from home most days, and do so with my feet up, so I earn an income without much physical exertion at all. Again, I am very lucky.

My wife is wonderfully supportive. But she has admitted to me it was easier for her to do this because she still sees me as a provider. Psychologically, that's easier for her.

The truth is, we sign up for sickness and health. And my wife honors that. But it sure as heck isn't easy for them, and so I try my best to cut my wife tons and tons of slack. She signed up for life; we made our vows. But nobody expects or wants this. It's hard - not easy. So I take her bad days in stride.

One thing I want to clear up, as I didn't check this thread after I made my post a few weeks ago.

The Zio Patch from iRythm *does* record every heart beat. The report it gives also shows 'detected event's from their computer analysis of the recording. But it will also pay special attention to the times you push that EVENT button. But it is indeed a RHYTHM monitor - it shows when beats occur - it doesn't show anything more than that, and it cannot produce the kind of charts a multi-lead holter can.

Tinks - this is entirely a guess: Perhaps the counting backward in increments of 7 is asking you to do something that's not easy, and requires mental concentration. If you are in a fog, or distracted by symptoms, that otherwise aren't significant enough to show up on their monitors, perhaps doing this helps show them stuff.

Again, I don't know. If someone is 'good at these kind of numbers games' it may be that they can do this easily no matter what, even if stressed by POTS, whereas someone who has struggled with such number work in their head may find the slightest thing - the test environment itself - may make them stumble.

Again, this is all a guess.

One suggestion: see if you can find a doctor who is willing to order this test from Mayo Clinic. It's probably not cheap.

http://www.mayomedicallaboratories.com/test-catalog/Overview/89904

I'd actually ask WHY the monitor is being used. In my case, I recently was given a 2-week monitor that still allowed me to take quick showers, and was invisible to everyone but my wife (well, for a guy that's easy as we wear full shirts vs. women who wear lots of clothes that expose their upper chests.) It's a size of a large band-aid, and it was called the "zio patch" from iRhythm. The reason I liked the two weeks duration is that it was only on day *5* that the issue that I felt rarely came up, so I was able to push the event button, and record THAT'S IT - and was relieved to find out it was normal. Further, we decided to change my beta blocker half way through the 2-week monitoring period and the doctor loved that - the 2 week monitor was able to show my better response to the new beta blocker, in detail. Overall, for MY purpose - to detect the value of the beta blocker change, and also to see what exactly that rare event was in me, the 2 week monitor was perfect. Your doctor may have different reasons, so this may not be appropriate for you, but could also your doctor may simply be unaware of this new technology.

Now this monitor is only two lead - the two ends of the 'band-aid'. If the doctor wants to see details of your heartbeat, that may not be sufficient. But if your doctor wants to largely measure heart rate, then this was a very cool, very useful thing.

*edited to fix typo

I've had autonomic issues (purely POTS - so far) since 2005; I am 51. During that time, I have been able to continue working, although during flare-ups, (such as May-September were for me), I have had to get help from my wife driving me pretty much everywhere.

I am blessed in that as a software engineer, I can do almost all my work while sitting with a laptop laying in bed, or sitting up in a chair with a hassock, or talking on the phone or video-conferencing with people from work. As a result, even on the worst days I can continue working, I have been able to fulfill a 'provider role' in my marriage - which has meant so much emotionally to me. I credit this success to first, being lucky in choosing a profession where this was possible, and second, working my tail off all my early career to be seen as a really valued employee so I am considered worth my job and salary even with my odd schedule and working conditions.

I hope it doesn't come off as sounding quaint and outdated, but when this disease stripped so much from my life, I find being able to cling to this gender-based traditional 'male provider role' has allowed me to retain some dignity with this disease. I look to that as me providing value to my wife, even though we take only local road trips for weekend/week-long getaways (air travel is horrible for me) and I am not often able to go out to dinners being tired in the evening. But we find ways to manage - I'll choose to work on a Saturday so I can have a mid-week day off with her and we go out to eat at a nice place during lunch and tell them to please 'hurry' with the food so we aren't sitting there too long - and the place stays quieter. We go to a local drive-in to see lots of films, so I can be leaning back in the seat, feet up on the dashboard of the car. Similarly, some other aspects of our relationship are impacted as well because of this disorder, and we creatively find ways to address those. Again, I am blessed with an amazing wife.

In a very real way my goals in life have really narrowed down to one, focused thing: I will show my wife that while I am not able to do everything I could when we first married, that I am still doing everything I can. If I have a 'good POTS day' we take it. A couple of years ago, I was blessed with a good POTS week - not sure why it happened - but it was as if I didn't even have POTS that week! I drove us everywhere, we went to a beach hotel nearby, walked all about, etc. If I could somehow figure out what happened that week, I would repeat it. The point is - I took advantage of it.

I think if we all challenge ourselves to do everything we can possibly do - and be satisfied we put all the effort we had in it - that we can be okay with ourselves. Rather than measure against a 'normal' life - measure yourself against 'did you make the most of what you can do today?'

This is how I make my peace with God as well: I realize that it is VERY unlikely this disorder will EVER go away, and for all I know, it will get worse and worse over time. But, none of us get to choose our circumstances. Some are born in America. Some are born in Somalia. Some are born wealthy, some poor. Some have great health, we have rotten health. I think God wants us to show what we do to lead a proper life in the circumstances in which we are placed, and simply asks us to show love and kindness to each other -- and to do what we can.

For me, I am in the VERY ANNOYED phase right now. For six 1/2 years, from 2005 until 2012 (early), I was slowly regaining capability. I was driving my wife 100+ miles in the car, going out to dinners, enjoying a movie. It was a 'quiet' life compared to life-before-POTS, but it had fun in it and looked to be slowly improving. Then, I did too much May of this year (flew to a relative's wedding, outside in 95 degree heat for hours - did great, but the next morning I paid for it with a huge POTS crash into a big setback, so it's like 2007 again. I hope it doesn't take *four years* to get to where I was before!

I'm 51. I think we are making great strides in understanding POTS, but I fear they won't be for my generation.

In reference to the person who mentioned you have to "up" the dosage of Propranolol every six months:

It's important to remember that POTS has so many root causes, most of which we understand so poorly, that it is impossible to make any general statement about its treatment. For example, I have been on Propranolol since early 2007 - for the first 3 months, it was 20mg a day, now it is 40, and I have remained on that dosage for over two years, with no lessening of effectiveness. I have good days and bad days, but overall, on my typical day, I feel somewhat better after two years on the drug - not worse.

So - the rule of thumb with POTS medicine is - "your mileage may vary"

Do you say, 'hang on a min while I take my BP'?! LOL

Actually - yes. My wife and I are both somewhat fascinated by this so - yeah, a couple of times I started with the blood pressure cuff attached to my arm and then, in the midst of things, my wife would press the button on the BP monitor, and *freeze* - I'd be very still and let it get checked.

And I have a heart monitor strap that I can wear around my chest, and my laptop computer will take continual heart readings from it. We've monitored them throughout and it is as if I feel a shudder - that I hadn't felt before POTS - and then my heart rate goes a huge step down after that shudder.

And it stays down for 30 minutes, then starts crawling back up.

In other words, we're both fascinated by this result - and actually have tried to get some reasonable data about it all.

There is something going on chemically that is helping me. I'd bet money on that. Because even when falling asleep, with that monitor on, my heart rate doesn't go down to these levels. Not at all....

If relaxation could reduce my heart rate and keep it from rising when standing, I would be first in line to purchase the biofeedback tapes at the bookstore.

Unfortunately, for many of us here, the disease causes the anxiety, not the other way around.

And I've yet to find a way to, through mental control, to lower the delta between supine and standing heart rate.

And I am pretty good at the mind over body stuff. I can pretty much block out pain, relax my way out of headaches, etc.

There's something in the bloodstream post-orgasm which is making me feel better, and I want to know what it is.

This is an extremely interesting set of responses. And like I said we are all adults, we know where babies come from, and this is a physical activity that puts unique stresses on the system - and it isn't "just like exercise" - unless exercise arouses you.

So.... there is something to learn here, that perhaps we need to let doctors get clued in over - because NOBODY is going to get funding for a study of this...

At least there is one other person "like me" - which is good to show that there is SOMETHING to what I believe.

For all we know, we may be discovering a very SIMPLE way to distinguish between different types of POTS.

I do know that at orgasm, there are huge releases of chemicals which affect how the sympathetic nervous system behaves.

Now..... who here has contact with a decent doctor that can think about this?

We shouldn't get embarassed about this. Sex is a vital part of living, and if some of you have real problems with it due to POTS, what better place to get advice.

We may have problems with our autonomic nervous systems, but we still have gonads and hormones - and if all of us can help each other cope with that reality and make it better for us.... well, I have to tell you - it sure helps lifestyle more than figuring out how to sit up at a straight-back chair long enough to eat a meal in a fancy restaurant.......

Seriously.

Okay - lots of us are adults here, so I want to ask an adult question. I am a male, in my 40s, diagnosed with POTS (but no loss of blood pressure standing) - just higher heart rate.

And - after sex - and the attending event during it - for about 30 minutes afterward - it's as if my POTS doesn't exist.

My heartrate doesn't go up much at all - maybe 2 or 3 BPM.

After 30-45 minutes - I'm back to me. Heartrate up about 15-20BPM.

it's to the point that I can predict it, and will actually get up and do stuff around the house because I don't feel as badly as I do normally.

Does anyone else experience this?

Yes, I joke with my wife that doing this is the best medicine - but seriously?

No real idea... but I do know that there's a difference between being winded from a marathon and having asthma. So, I think there's a difference between having post-space-travel-sickness and an autonomic issue. In other words, I can't take this one on faith, but would be interested in seeing what happens if someone tries it with a POTS patient.

As for medicines aimed at fixing the problem if it is found that this applies to the majority of POTS patients no time frame was given and in the study it says that 'no tests are imminent' but I was told that they were already aware of some medications that could resolve hypermethylation but that these were quite toxic. He was very positive about finding other chemicals that were less harmful in the future. It could be ten years or more - or in a much quicker timeframe I guess, but atleast they know what they are looking for.

I tell you this.

I would trade 5 years of my life to live the remaining years of my life without this disease.

There are probably many people on this forum who feel the same way.

There are some medicines that do help hypermethylation in cancerous cells.

Bluntly: If it turns out THIS is the cause for the majority of POTS, well, it's good and bad news. Good, because it is KNOWN. And this bizzare claim of "Oh - you just started losing nerve endings in your legs" - well, that always seemed od. But, a drug to fix this is not easy. However, even if it is not fixable, it may be that treatments, acknowledging (if true) THIS problem as the problem in POTS, maybe some treatments could create a maintenance lifestyle better than the "squeeze the blood vessels and fill em with fluid" hacks we have today.

how do you tackle your fatigue.I get it so bad that it stops me doing anything.

Any ideas of how i can overcome it?

thanks

Gena said some good things. You need to decide, with those you trust, if the herbal route is best for you.

There are some psychological things I do to deal with fatigure. The most important to me is that I have different activities I do ONLY when I am at different levels of fatigue. I am about and at work at my best levels. If I get somewhat lower level of energy, I work on house paperwork, that backpiles. If less energy, I read or hang out online. If even less, I watch TV. TV, for example, I won't watch, and I'll let the TiVo just record stuff, while I am feeling better. That way, if I am very tired, in an odd sense, I have something to look forward to!

I know this may sound odd, but for me, I've found that thinking that way is best. And that's kinda what dealing with this stuff is about - whatever works for you.

Now, this is purely random speculation.

IF the Baker institute is right, that the majority of POTS patients have hypermethylation...

THEN could something like Decitabine help?

Hmmm........

No idea, of course, but.....

Also, if the Baker institute is right, then a whole lotta people in this forum don't have dysautonomia at all....

A study claiming so much different will need careful review... and I think what the other poster is saying is that it is currently undergoing peer review.

I gotta tell ya, at least for me, I feel like I am frequently on an adrenalin rush, and this doesn't "pattern match" to partial deneveration at all.

Well, we'll see... hopes have gotten up before...

Well, I am just trying to get into the swing of things with exercise. I am now walking on a treadmill for 2 45-minute sessions a day. The walk is normal walking pace, as if you were walking down a sidewalk in no particular hurry.

That is a big thing for me, when 4 weeks ago, the challenge for me was sitting in a chair for more than an hour without lying down.

I've made that exercise the center of my existence. I've had to. I can't stop, even if I get in pain. The exercise is the only thing that gives me the overall stamina to be semi normal at home.

I'm not a doctor. So I don't really know any of this.. but I have wondered about this as well, and here are my hunches. I am seeing my doctor later today, so I'll see if she has any answer to these.

1) High heart rate and life-expectancy.

I honestly believe we don't know the answer to this one beyond the obvious high heart rate is worse than low heart-rate. But I don't think POTS is worse than other forms of elevated heart-rate, and for those (like me) who have a heart-rate that is pretty normal sitting and standing, but don't stand all that much day-to-day anyway, well, my heart rate isn't elevated all that much... (total time).. it's just that when I stand, my heart-rate stinks... I would imagine that if my heart-rate were at my standing level 24 hours a day, the doctor would tell me something different.

2) Older people with POTS.

POTS is a new diagnosis. And older people have, anyway, growing orthostatic intolerance. So their symptoms are put in a 'just getting old' category. You'd need a study to see if lots of older people have undetected POTS. And personally, with the very limited studies of POTS going on right now. I would rather have the researchers looking for a maintenance-level cure than doing longitudal studies that offer no value except to tell me when, on average, I will die.

Yikes!!I'm back to being nervous again.

Again - please call your lab - and ask them what they have planned for you. I would call the lab, as well as the doctor, as honestly, some labs do a standard test and the doctor doesn't even know the details of how the test is performed.

Melly -

Call the center doing the testing. Make sure you ask about YOUR test specifically, not "generally, how do you do it" I was given the test without the injection. It was already known I would show symptoms - as my higher heartrate was obvious to everyone.

By calling the center, you could relieve your mind if they aren't using epi, and if they are, you could talk to your doctor about it. Given the amount of time before the test, you should have plenty of opportunity to resolve it.

Susie -

As other people have said, your mom's greatest fear is losing you. You do need to have a discussion with your mom about the truth of this: when a loved one has serious health issues, it causes those around them to treat them as younger. This is because as humans, we are used to equating the level of care a person needs with their mental and emotional maturity. One of the budens we bear in this forum is that we are not normal in that regard. We may need people to cook for us, clean for us, drive us places often, but we would be quite mentally and emotional capable of leading independent, separate lives if just our bodies would let us.

But people not in our situation equate all that cooking, cleaning, driving with immaturity and have difficulty separating the physical dependence from the mental and emotional independence.

And truthfully, maybe they shouldn't have to. Perhaps it's quite difficult to give that much care physically without also wanting to care emotionally and mentally at the same time. If we are asking them to do so much for us in physical ways, perhaps that means we should tolerate them wanting influence in those other ways as well.

Here's my experience: I've been married 15 years. I've been sick with POTS for 5 months. I had a big crash in July that I am just now getting out of. Well, in that time my wife has had to do a lot for me. Drive me to work (I worry about having a problem while driving, and ethically, until I can feel out of this slump, I won't), bring food to me instead of me at a table, fetch stuff for me, etc. Really, in some ways, watch over me like she would a child. Well, what else has happened? She has started watching and commenting on how much I eat, how much I sleep, other stuff like that.

Do I need help being told what to do in those areas? Absolutely not. Do I like being asked those things? Absolutely not. Do I accept that as part of the package? Absolutely yes. Because I need her to worry in so many new areas, I really can't complain if she adds a few additional of her own. She is now, my caregiver. And she is not a puppet. If as part of the 'sickness or health' of a marriage vow, she has to do this, then I really can't expect to control exactly what she worries about. So I accept those additional areas, usually without complaint (I am human too.)

Please learn to live with your mom - who needs to do so much for you - you may 'crash' with your symptoms next week - I hope not! - but you may. You may need her again, for many things. Don't begrudge the fact that she is human and will have worries you wish she didn't have - especially because you do need, at times, her to worry about so much.

I thought, "ok, curl up with a good book in the quiet but my vision is messed up so that's not working out.

I am sorry you are going through this, Poohbear!

I know this is the least of your issues, but have you considered books on tape (or CD)? I find it is a wonderful feeling - it's as if someone is reading a bedtime story to you