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Worst Trigger: Has It Changed Over Time?

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Weird. My first trigger seemed to almost always be sleep apnea triggering me into a nasty flare that left me pretty much unable to move. I was weak and short of breath and felt like somebody had hotwired me to 2000 volts while sleeping, turned it off, and then I'd awoken.---extreme agitation (like drinking 50 cups of coffee) and exhaustion (like pushing my lungs manually in and out to breathe)

Later my worst trigger seemed to be food and I was confirmed sudden onset various food allergies including milk cassein, peanuts, and especially MSG and I'll flare into tachychardia, bradychardia,-- and extreme weakness for up to 48 hours. Much worse if I got hold of a heavy flavor additive, it almost made me manic. Who knew Wendys chili was loaded with MSG? Or KFC? Barbecue sauce. Spaghetti sauce? endless

Then it was "sudden exertion" where I accidentally spiked my blood pressure/pulse suddenly. Like forgetting not to run up stairs (old habits die hard). Or yanking on the lawn mower cord hard-----immediate bedridden 24 hour flare. I dont even know if this is a "trigger" anymore because i NEVER do any sudden extreme exertion.

Now, its HEAT. I thrive in cold or even freezing situations which is why i hit the pool everyday i can. Im almost normal in an antigravity cold situation and can even stress myself like the old days. Its the only time I truly feel completely normal.

But the other day a friend asked me to help look for a used car. Naturally with DA heat intolerance in the extreme i looked on weather.com and confirmed it would only be low seventies that morning. We got onto the parking lot and the sun was actually a direct blaze onto the asphalt and within seconds I knew I shouldnt be out there. It was the direct sunlight on my skin (at the same temp Id have been ok in the shade).

After nearly ten minutes of that, and nearly going syncope I rushed back to my cars AC, started driving, found two cold gatorades, popped two mega potassium pills with some extra salt, and threw down a clonapin to handle the increasing

vertigo. i knew I was in trouble, and sure enough I ended up with flare symptoms for almost 2 days--I'd only go outside after dusk but once again it was almost like my internal wiring had been fried including what I call the empty head sydrome---as if no blood was flowing in there.

Weird, Im wondering what my next major trigger is going to be because when I started out it DEFINITELY was not heat. Now heat controls pretty much every minute of every day.

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I wouldn't say my triggers have changed, but multiply as time goes on. I have never felt real well in the heat, but it's different now. I can't tolerate the heat. I feel better when it's cool outside and in the house. Although if it's too cold, I have trouble keeping blood flow to my hands and feet. I've been trying to desensitize myself to heat, allergies, foods, etc by exposing myself in small increments. I think it's helped a little with heat and food, but not allergies. I don't know how the POTSies in the Southern States live through the intense heat!

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My triggers don't really change but sometimes one or another trigger is more noticeable. Heat is a huge trigger right now, yet last summer, I was able to do alot more outside then this year.

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I wonder myself about "triggers". I used to know what would bring on a flare but now, not so sure. I'm with you Spinner - heat is a definite problem. I guess it is because we don't perspire so, we can't cool down like "normal" people.

I just am at the point that I think my nervous system is so messed up that just about anything can "trigger" a type of flare. I was sitting at my desk at work today when I suddenly felt like I was going to die - not anxiety - just bottomed-out my blood pressure, ears began ringing loudly, lost the ability to focus my eyes, couldn't talk straight, turned an exquisite shade of pale. I told my co-workers that I was in trouble, popped an extra midodrine, drank a Propel, and waited for my BP to rise enough so I could drive home. I really don't have any idea what triggered this particular flare. These episodes are occurring more frequently and without warning - sometimes lasting days. Go figure.....

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E Soskis,

If the benefits from IVIG and plasmapheresis are only "transient", which happens to most people with AAG, that is usually an indicator that immunosuppression is needed.

I am starting on chemotherapy soon, in the form of cytoxan.

I hope you "catch" a break from this disease.

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Heats a definite problem but it's winter now in Australia and I'm not feeling much better. I think it's got to the point that I need to stop thinking in terms of 'flares' -- I seem to feel like death warmed up (overly warmed at that) most of the time. Now I am re-examining my last 15 years it seems that 15 years ago I was having flares and that 10 years ago it pretty much became a full time thing but with varying responses -- some days I do better, some days I do worse and mostly I can't see a reason for it.

I can trigger breakthrough migraine though, for sure. But mostly migraine just happens. I can't explain the really painful ones that last days. I just don't think there is a trigger other than POTS being the trigger.

Perhaps for some of us 'flares' is not the right word. Just thinking.

blue

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E Soskis, on 04 Jul 2013 - 08:30 AM, said:

I wonder myself about "triggers". I used to know what would bring on a flare but now, not so sure. I'm with you Spinner - heat is a definite problem. I guess it is because we don't perspire so, we can't cool down like "normal" people.

I just am at the point that I think my nervous system is so messed up that just about anything can "trigger" a type of flare. I was sitting at my desk at work today when I suddenly felt like I was going to die - not anxiety - just bottomed-out my blood pressure, ears began ringing loudly, lost the ability to focus my eyes, couldn't talk straight, turned an exquisite shade of pale. I told my co-workers that I was in trouble, popped an extra midodrine, drank a Propel, and waited for my BP to rise enough so I could drive home. I really don't have any idea what triggered this particular flare. These episodes are occurring more frequently and without warning - sometimes lasting days. Go figure.....

Skosis, spinner.

I did not sweat for 6 years. I was 4 years into 'no sweating' when I was diagnosed. I continued to have the problem for a further 2 years and then suddenly I started to sweat -- so slightly it was just noticeable to me. Sweating ability grew stronger from then on in and now 6 years??? (I forget exactly how long) on, I can and do sweat profusely, so my body can cool itself. I sweat to the point of my clothes wringing wet. It's like the pendulum swung from one side to the other. And I can sweat profusely on a winters day. But more likely in summer.

As annoying as profuse sweating is, it is so much better than not being able to sweat at all. I hope you guys get ability the ability to sweat back. Trying to keep my body from overheating in summer used to be so hard. And took so much fore-thought, eg. where was I going, what time, what is the weather report, etc. On days at home I used to be in and out of the shower to cool myself down.

Sorry to hear you had such a bad day E.Skosis.

blue

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"sitting at my desk" definitely sounds like a stress trigger.

You may not be aware of your level of exertion just sitting there, but my last major flare happened at the end of a work

shift. I could feel it coming on. It was also my last Er visit. Could be that your adrenals were working overtime for awhile and you

felt ok, but then they bottomed out and couldnt produce any more cortisol. Total crash but it seemed to come out of the

blue.

You can get a standing order cortisol order from your doc, and go directly to a lab and have blood drawn to see whats happening.

Other possibilities could be an excitotoxity from something you ate for lunch? (MSG?), or an electrolyte/potassium/salt/hydration

problem showing up.

Im going to try to get on fluorinef myself shortly and see if that smooths out these type of electrolyte flares. Meantime gatorade lite

can help prevent them.


I wonder myself about "triggers". I used to know what would bring on a flare but now, not so sure. I'm with you Spinner - heat is a definite problem. I guess it is because we don't perspire so, we can't cool down like "normal" people.

I just am at the point that I think my nervous system is so messed up that just about anything can "trigger" a type of flare. I was sitting at my desk at work today when I suddenly felt like I was going to die - not anxiety - just bottomed-out my blood pressure, ears began ringing loudly, lost the ability to focus my eyes, couldn't talk straight, turned an exquisite shade of pale. I told my co-workers that I was in trouble, popped an extra midodrine, drank a Propel, and waited for my BP to rise enough so I could drive home. I really don't have any idea what triggered this particular flare. These episodes are occurring more frequently and without warning - sometimes lasting days. Go figure.....

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I'm into my 3rd year of plasmapheresis and previously had a year of IVIG - I think you are right Spinner, the plasmapheresis is beginning to wear off. I did ask my doc about the next step and he wants me to go back into the hospital and begin IVIG again - I loathe this option because when I stopped the first time, I was having terrible allergic responses to the IVIG and could not tolerate a normal rate of infusion - it took all day just to get a little infused - I just don't think I can go back to that existence. I was in the hospital for a whole day once a week. With the loading dose, I experienced aseptic meningitis and became terribly ill - do not think IVIG is the answer to the AAG. If I choose to become immunosuppressed, I will have to retire as I work in the hospital. Even though I am at a "desk" job, I still am required to move about the hospital and occasionally interact with patients in our trauma area. I can't be immunosuppressed and continue my job.

I hope the flourinef helps you - I was on it for awhile and didn't have a tremendously positive response - it seems to either help a lot or not much at all. Blue, I'm glad you are sweating now - that sounds like improvement and a move toward the right direction.

I guess the bottom line is we have to manage our diseases on a daily basis and do the best we can to prevent the flares understanding we will flare at times for no apparent reason - this is a day-to-day disease that requires constant vigilance and generally just feeling kind of yucky all the time......

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*dont know about fluorinef or anything else until we try it, frustrating but everythings trial and error

*i went through a period where i virtually stopped sweating. Luckily a doc gave me something to initiated perspiration

and it seemed to jump start my system.

*I dont think people realize how stress is the main universal trigger. Even a desk job..........your adrenaline can

pump up and down with the problems and mental activity. Youre also exposed sometimes to loud noises, confrontations,

phones, demands, and it can easily send you into a flare, not to mention any kind of traffic commute.

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The more I try to figure this out the more befuddled I am. I believe that not only are we all different, but as we age our own bodies are changing. Yes, I believe environmental changes, diet factors, weather (heat/cold and barometric pressure) also play a role, and because of all of these factors, it is even more frustrating for the medical staff and researchers who are trying to figure it out to enable to treat us properly. There are so many types and degrees of dysautonomia, as well, with other disorders that seem to be attached and even make it more complicated. For example, some have connective tissue disorders, some have autoimmune diseases, some have Mitral Valve Prolapse, some have sleep apnea, some have neurological components, some have blood diseases, and some have endocrine disorders. The list seems endless...so that being said, we need to do our own research to go to the right doctors in order to get the proper treatment, but to be honest, I'll be very surprised if they come up with some medical cure at least in my lifetime. I say this not to depress, but I'm just being realistic.

I don't leave the house without something to drink; if I forget I will stop to get something. I take all my medications. I exercise when I can, at least twice a week. I believe that you can eliminate some flares by being conscientious, but others are unpredictable, and come without explanation. Sometimes I can figure it out, and other times, I just chalk it off to the nature of the beast.

I believe I'm doing everything I can for myself to keep as healthy as I can be. I've been diagnosed for 2 years, but was sick for 13 before that time. I would have to say that the last 3 years before treatment, I was a complete mess. Now, I'm the best I can be until a cure. I take each day as a new challenge, appreciate the good ones, help others on several closed dysautonomia groups, pray a lot, and do the everything I can to be the best that I can be!! I'm a retired nurse. My hat goes off to you all who have to work for a living. I know I can't go back to nursing, but I can always help others with my knowledge, and I've even considered volunteering some, because right now, I'm the best I've been in 2 years. I'm still not what I used to be, which was a bundle of energy, but I'm also not getting any younger...lol

I still love coming to this site. I believe the ones here are the most knowledgeable about our disorder.

Hi Spinner...just checking in :)

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