Aa
What do you guys do when stress is causing a flare up?
You know that saying "when it rains it pours?" Well, I'm having one of *those* days (actually more like a cluster of those days), and today my dysauto decided the stress was too much and my symptoms are going haywire. My heart feels like it's pounding out of my chest, I'm flushing so bad it looks like I ran into an overturned blush delivery truck on the highway, I keep having those random "gasps" for deep breaths of air from the shortness of breath that strangers always seem to misinterpret as sighs of boredom (le sigh), and I have that awful tremulous feeling all over like every nerve in my body is a-buzz.
What am I supposed to do to settle down my dysauto, when all the things that are flaring it up are things that are totally beyond my control? It would be nice if my prior authorization on zofran hadn't run out (I had NO idea a one day supply would cost about $20 out-of-pocket! I can't believe I paid $20.49 for THREE pills! What!?!?) and my doctor wasn't late in submitting the renewal, my dog wasn't headed for surgery tomorrow, I hadn't had to go to a neuro appointment today in the midst of trying to juggle phone calls with the doc's office/pharmacy/insurance company re: the zofran, etc., etc., etc., but I can't just POOF away all the stressful situations in my life. So how do I get my symptoms to settle down? I'm trying to fluid load, but I'm not getting much salt because the stress is upping my nausea and food sounds rather unappealing.
Should I try to force the food thing and get more salt in anyway? Do you guys find that's helpful in these circumstances, or will I just make myself more sick and regret it? Do I need some cheese with this whine? :-p
What am I supposed to do to settle down my dysauto, when all the things that are flaring it up are things that are totally beyond my control? It would be nice if my prior authorization on zofran hadn't run out (I had NO idea a one day supply would cost about $20 out-of-pocket! I can't believe I paid $20.49 for THREE pills! What!?!?) and my doctor wasn't late in submitting the renewal, my dog wasn't headed for surgery tomorrow, I hadn't had to go to a neuro appointment today in the midst of trying to juggle phone calls with the doc's office/pharmacy/insurance company re: the zofran, etc., etc., etc., but I can't just POOF away all the stressful situations in my life. So how do I get my symptoms to settle down? I'm trying to fluid load, but I'm not getting much salt because the stress is upping my nausea and food sounds rather unappealing.
Should I try to force the food thing and get more salt in anyway? Do you guys find that's helpful in these circumstances, or will I just make myself more sick and regret it? Do I need some cheese with this whine? :-p
Heiferly,
Glad your dog doesn't have cancer and hope he has a smooth recovery. He's in good hands!
Laura
Glad your dog doesn't have cancer and hope he has a smooth recovery. He's in good hands!
Laura
Could you do us a favor and copy and paste your post and use it to start a new thread of your own? To do that, click on the green button at the top of the page that says "Post a Question." Then just paste the same text you used here to say the same thing (or if you want you could retype it and say something slightly different or whatever).
Your post is on a different topic than the subject of this thread (which is what to do when stress causes a symptom flare up in patients with diagnosed dysautonomia ... your subject might be something more along the lines of "New symptoms, no diagnosis, looking for opinions" or similar). More importantly, your post deserves to get attention in its own right and where it is now it's buried at the bottom of this existing thread that will likely "die out" soon because my issue has largely been resolved. We ask that people start a new thread to present their own questions so that community members can see the new thread and it will come to their attention that a new question or comment has been posted.
Let me know if you have any questions on how to post your own topic. You can send me a private message by hovering your cursor over my username (heiferly) in blue, and clicking on "send message" in the dropdown menu that appears.
Your post is on a different topic than the subject of this thread (which is what to do when stress causes a symptom flare up in patients with diagnosed dysautonomia ... your subject might be something more along the lines of "New symptoms, no diagnosis, looking for opinions" or similar). More importantly, your post deserves to get attention in its own right and where it is now it's buried at the bottom of this existing thread that will likely "die out" soon because my issue has largely been resolved. We ask that people start a new thread to present their own questions so that community members can see the new thread and it will come to their attention that a new question or comment has been posted.
Let me know if you have any questions on how to post your own topic. You can send me a private message by hovering your cursor over my username (heiferly) in blue, and clicking on "send message" in the dropdown menu that appears.
Glad to hear your dog is ok :)
My neighbor just lost one of hers today...it's so hard!
Stephanie
My neighbor just lost one of hers today...it's so hard!
Stephanie
Hi Heiferly and all
I'm brand new to all of this. I go in for a tilt table test next week.
Since you all seem so nice can I share my story with you and see what you think?
29, white male, 165 pounds (lost 10 pounds in 2 weeks a couple of weeks ago - used to be 175. I've managed to stay steady at 165 now but we don't know what caused the rapid weight loss).
During a physical exam 4 weeks ago, we discovered that my heart rate was up (ranging from 90bpm to 119 bpm). I wish I could say that it's ALWAYS tachy ONLY when standing but it seems to vary. One thing I have noticed is that when standing I do usually have a higher HR and lower BP than when sitting or laying down.
However, and this is the point that I'd like some feedback on, my overall heart rate seems to be higher than it should at all times. I'd say the average lately has been b/w 90 and 110 and that's when I'm doing nothing at all.
I can't work. I've lost my concentration. Have not worked in 4 weeks.
Normally I have slighly high blood pressure (on average, I run 135/90). Throughout all of this I've been up and down with my BP. Lowest is like 110/80 (standing). Highest is like 140/90.
I had an Echocardiogram which my doc said showed normal heart function.
I had a 24 hour heart monitor which showed sinus rhythm. Range of HR was 46 (sleep) to 135 (doing nothing, but awake).
Today, I am actually wearing my second holter monitor and will turn it in to the doc on Monday.
Sorry I know this was LONG.
My question is: based on the fact that I have borderline high blood pressure, do you think i should try beta blockers or other drugs to get my HR lower? Even if it falls when I'm standing it probably shouldn't fall into the WAY too low area?
I would love to have any and all feedback that you nice folks could share with me. I am so glad to have found you!
I'm brand new to all of this. I go in for a tilt table test next week.
Since you all seem so nice can I share my story with you and see what you think?
29, white male, 165 pounds (lost 10 pounds in 2 weeks a couple of weeks ago - used to be 175. I've managed to stay steady at 165 now but we don't know what caused the rapid weight loss).
During a physical exam 4 weeks ago, we discovered that my heart rate was up (ranging from 90bpm to 119 bpm). I wish I could say that it's ALWAYS tachy ONLY when standing but it seems to vary. One thing I have noticed is that when standing I do usually have a higher HR and lower BP than when sitting or laying down.
However, and this is the point that I'd like some feedback on, my overall heart rate seems to be higher than it should at all times. I'd say the average lately has been b/w 90 and 110 and that's when I'm doing nothing at all.
I can't work. I've lost my concentration. Have not worked in 4 weeks.
Normally I have slighly high blood pressure (on average, I run 135/90). Throughout all of this I've been up and down with my BP. Lowest is like 110/80 (standing). Highest is like 140/90.
I had an Echocardiogram which my doc said showed normal heart function.
I had a 24 hour heart monitor which showed sinus rhythm. Range of HR was 46 (sleep) to 135 (doing nothing, but awake).
Today, I am actually wearing my second holter monitor and will turn it in to the doc on Monday.
Sorry I know this was LONG.
My question is: based on the fact that I have borderline high blood pressure, do you think i should try beta blockers or other drugs to get my HR lower? Even if it falls when I'm standing it probably shouldn't fall into the WAY too low area?
I would love to have any and all feedback that you nice folks could share with me. I am so glad to have found you!
Got my pup home safe ... the surgery went well and the vet said it was NOT cancer!!! I feel SOOOOOOOOOOOOO much less stressed out. We're spending the evening monitoring the dog as the anesthesia finishes wearing off so we can watch for nausea, administer pain meds, keep him from messing with the wounds, etc., but so far--so good!
I'm drained and can't wait for some good sleep, but hopefully my symptoms can settle down more now.
I do think I need to ask more about possible med changes in case there's something better I could be taking to manage my tachy. Thanks for the suggestions everyone!
I'm drained and can't wait for some good sleep, but hopefully my symptoms can settle down more now.
I do think I need to ask more about possible med changes in case there's something better I could be taking to manage my tachy. Thanks for the suggestions everyone!
Sorry things have been so challenging with your POTS and insurance/authorization nightmares. I can certainly relate. Recently it took almost two weeks of BEGGING to get a similar situation straightened out for me. It makes me very anxious and stressed when that happens and of course that is bad for POTS and general sanity!
Have you tried Clonidine? I am finding Clonidine helpful in bringing down my heart rate to the 70's, which is great for me. And Fludrocortisone is keeping my BP normal most of the time. Clonidine is in a class of medications called centrally acting alpha-agonist hypotensive agents. According to my cardiologist, I can't take a lot of other meds b/c I have asthma. I also take salt supplements and don't have problems with those, as some people do. Just have to make sure I drink a glass of water when I take them or else I do feel bad. This combo is what has finally resulted in less pre-syncope (i fortunately haven't ever fainted, whew). I do still feel exhausted much of the time but it's a little better and I have less shortness of breath.
Glad you finally got your authorization and found a friend to drive you. I'm sure that was a big relief. Hope you are feeling better.
Hope things go smoothly for your dog.
Laura
Have you tried Clonidine? I am finding Clonidine helpful in bringing down my heart rate to the 70's, which is great for me. And Fludrocortisone is keeping my BP normal most of the time. Clonidine is in a class of medications called centrally acting alpha-agonist hypotensive agents. According to my cardiologist, I can't take a lot of other meds b/c I have asthma. I also take salt supplements and don't have problems with those, as some people do. Just have to make sure I drink a glass of water when I take them or else I do feel bad. This combo is what has finally resulted in less pre-syncope (i fortunately haven't ever fainted, whew). I do still feel exhausted much of the time but it's a little better and I have less shortness of breath.
Glad you finally got your authorization and found a friend to drive you. I'm sure that was a big relief. Hope you are feeling better.
Hope things go smoothly for your dog.
Laura
Great on the insurance coming through and getting the ride to the pharmacy! Whew!!
That was a close one.
As for beta blockers, here is a great link explaining how they are not created equal.
They target different receptors so it is understandable that one that effected the digestive system as well as the cardiac might cause you some problems. I would think picking out one that exclusively targets the heart receptors might be the key and maybe using a pill chopper if needed to try a lower dose.
http://www.medicinenet.com/beta_blockers/article.htm
Your idea to use another class of drugs might work too. My doctor gave me verapamil to lower my heart rate but at the time I had this elevated BP as well from the too high thyroid dose. I expect to use this a very short time. It takes about 4-6 weeks to get the thyroid adjusted. By then my BP will be slipping low again. I will have to probably cut the dose of verapamil in half before that too. Again not suggesting this for anyone else just pointing out that yes you are right that there might be another class of drugs that may work.
I find I need parameters and a little arsenal of what I can use for this or that as things just keep changing. I am sure that little bag of tricks will just keep growing as things
continue to change.
I hope you get a good nights sleep and good luck with your tomorrow. Marie
That was a close one.
As for beta blockers, here is a great link explaining how they are not created equal.
They target different receptors so it is understandable that one that effected the digestive system as well as the cardiac might cause you some problems. I would think picking out one that exclusively targets the heart receptors might be the key and maybe using a pill chopper if needed to try a lower dose.
http://www.medicinenet.com/beta_blockers/article.htm
Your idea to use another class of drugs might work too. My doctor gave me verapamil to lower my heart rate but at the time I had this elevated BP as well from the too high thyroid dose. I expect to use this a very short time. It takes about 4-6 weeks to get the thyroid adjusted. By then my BP will be slipping low again. I will have to probably cut the dose of verapamil in half before that too. Again not suggesting this for anyone else just pointing out that yes you are right that there might be another class of drugs that may work.
I find I need parameters and a little arsenal of what I can use for this or that as things just keep changing. I am sure that little bag of tricks will just keep growing as things
continue to change.
I hope you get a good nights sleep and good luck with your tomorrow. Marie
Oh, forgot to say ... I did snag a friend to drive across town to bring me to the pharmacy and I got my ondansetron!
Normally I only have postural tachycardia, so my HR is within the normal range as long as I'm not standing up. As I said, when they tried to reduce the postural tachycardia with a beta blocker, I couldn't tolerate the medication. I think it's a higher priority to keep my BP from dropping too much and making me have more syncope than it is to stop the tachycardia. Although the postural tachycardia can be tiresome, it is a compensatory reaction and to some extent it can help stave off syncope if it is getting enough oxygen to the vital organs. (It's when the postural tachycardia fails to compensate enough that syncope ensues in POTS patients, for example.)
I really wish it weren't taking so long for the stuff to go through for me to start IV treatments. I suspect that I'll have less trouble with the tachycardia once I'm on the routine IVs; the ones I get for emergencies seem to help both my BP and HR as well as my overall feelings of malaise and fatigue. I don't want to get my hopes *too* high, but I do think this is going to be a good treatment option for me. I just wish it would happen QUICKLY.
Thanks everyone for all your support today!! You all are the BEST!!!! Off to go try and rest and load up on fluids (and snuggle with my still unsuspecting pup), H.
I really wish it weren't taking so long for the stuff to go through for me to start IV treatments. I suspect that I'll have less trouble with the tachycardia once I'm on the routine IVs; the ones I get for emergencies seem to help both my BP and HR as well as my overall feelings of malaise and fatigue. I don't want to get my hopes *too* high, but I do think this is going to be a good treatment option for me. I just wish it would happen QUICKLY.
Thanks everyone for all your support today!! You all are the BEST!!!! Off to go try and rest and load up on fluids (and snuggle with my still unsuspecting pup), H.
Now that I.read Maries post I.have to.ask. Aren't u on something for.the tachycardia? I.cant imagine y they let your heartrate run so high. The first thing my Dr did was put me on betablocker as I was so.tachy and now I am brady but is still better than the constant heart workouts I had b4. Hadn't thought to even question that when u said what your heartrate was. That in itself is a big stressor.
Beta blockers can lower the HR, but I didn't have success when I tried taking one in the past. One problem is that while they do lower HR, they also lower BP. This was a major issue for me because my docs and pharmacist set a lower limit as to how low I was allowed to let my BP get with the beta blocker, and it consistently would push mine under that so I wouldn't be able to take it; I don't always have orthostatic hypotension (i.e. my BP always drops when I stand, but it's not always a significant enough drop to meet the medical definition of OH) but it's frequent enough that being on any med that exacerbates it is problematic.
The other issue I had was a weird side effect and I have no clue exactly what kind of interaction it was having with my dysauto to cause it but ... I started having weird problems keeping my stomach contents where they belonged when I took the beta blocker.
I should ask if there is something other than beta blockers that could work on tachycardia, particularly if there is something that could be taken PRN. It can't hurt to ask.
Well, the on-call physician from my doc's office called the 1-800 number for the prior-approval department at my insurance and got them to re-certify my ondansetron (generic zofran) for 12 more months!! I had more anxiety when initially the pharmacy was still getting error messages, but I called back in another half hour and it went through! Now I just need to get a ride to the pharmacy by 9 PM ... I'm not even going to start on how THAT has snowballed into something out of The Three Stooges. If I somehow manage to pick up this medicine before the pharmacy closes at 9 PM, I'm going to consider it the dysautonomaniac's equivalent of having climbed Mt. Everest! :-p
The other issue I had was a weird side effect and I have no clue exactly what kind of interaction it was having with my dysauto to cause it but ... I started having weird problems keeping my stomach contents where they belonged when I took the beta blocker.
I should ask if there is something other than beta blockers that could work on tachycardia, particularly if there is something that could be taken PRN. It can't hurt to ask.
Well, the on-call physician from my doc's office called the 1-800 number for the prior-approval department at my insurance and got them to re-certify my ondansetron (generic zofran) for 12 more months!! I had more anxiety when initially the pharmacy was still getting error messages, but I called back in another half hour and it went through! Now I just need to get a ride to the pharmacy by 9 PM ... I'm not even going to start on how THAT has snowballed into something out of The Three Stooges. If I somehow manage to pick up this medicine before the pharmacy closes at 9 PM, I'm going to consider it the dysautonomaniac's equivalent of having climbed Mt. Everest! :-p
Do you have any med you can use emergently to get your HR down? Getting it to stop speeding would help with a lot.
I have a standby med to emergently lower my BP. I was wondering if you have a similar med on hand that you are supposed to take for a HR over a certain amt? It would have to be a short acting one. When I saw my nephrologist last time I had gone tachy and he put me on a BP med as my BP was a bit higher too and it has brought down the PR. Of course I won't stay on it too long. It is just until this artificial high BP goes down from the thyroid med.
We have been discussing what makes some of our BP's periodically go up from stress.
This seems like a parallel discussion only insert PR for BP. I have a feeling their are similar suspected things causing it like surges of dopamine or surges of adrenaline. Hopefully someone soon figures this one out and what we can do for each parameter that gets out of control. I know the speeding heart causes the shortness of breath. It is maddening!
I am so glad you got some rest. Know it didn't fix everything but it had to help. I would say let as much go as you can and take periodic deep breaths. Hydrate as best as you can. I would get a cardiac med if there is one to bring down the heart rate. Other then that I will send a cyber hug as it sounds like you have a lot happening all at once!
Hope things settle down! Let us know how things go...Marie
I have a standby med to emergently lower my BP. I was wondering if you have a similar med on hand that you are supposed to take for a HR over a certain amt? It would have to be a short acting one. When I saw my nephrologist last time I had gone tachy and he put me on a BP med as my BP was a bit higher too and it has brought down the PR. Of course I won't stay on it too long. It is just until this artificial high BP goes down from the thyroid med.
We have been discussing what makes some of our BP's periodically go up from stress.
This seems like a parallel discussion only insert PR for BP. I have a feeling their are similar suspected things causing it like surges of dopamine or surges of adrenaline. Hopefully someone soon figures this one out and what we can do for each parameter that gets out of control. I know the speeding heart causes the shortness of breath. It is maddening!
I am so glad you got some rest. Know it didn't fix everything but it had to help. I would say let as much go as you can and take periodic deep breaths. Hydrate as best as you can. I would get a cardiac med if there is one to bring down the heart rate. Other then that I will send a cyber hug as it sounds like you have a lot happening all at once!
Hope things settle down! Let us know how things go...Marie
Heiferly- I am glad u got a short nap. I hope your dogs ok. Hopefully your Dr will get in gear. If we could give them AD and its symptoms for a week maybe they would get a clue.
Beema
Beema
I *never* thought these words would come out of my mouth but:
thank goodness for my narcolepsy!
I forced myself to lie down between my home health aide's shifts when I would normally take my first nap of the day, even though I thought there was NO chance I could fall asleep because I was so "wired" from the stress. Well, the narcolepsy won that battle and I did drift off!! Yippee!!! I'm still tachy, flushing, and nauseated ... but everything seems an eensy bit better now that I've had a short nap and that bit of horizontal time.
I'm going to take Beema's advice and the wisdom that only a growing boy's stomach-of-steel can bring (leave it to a young man to eat like that even when he's in bed with flared up POTS and nausea!! Does ANYTHING stop them from eating?! hahaha), and do my best to eat something now and get my sodium up for the day.
I just called my insurance (yet again) and they still haven't heard from my doc so I paged the on-call service and will see if I can spur her into action that way. I suppose if I can't make this happen before the pharmacy closes at 9 tonight, I'm just going to run out of zofran and let it "go down" that way. Hitch is getting dropped off for surgery at 9 AM, so if I'm out of zofran by 6 AM and not holding down my other meds, we can just swing by the hospital and drop me off after the dog gets dropped off. I imagine if they have to administer IV zofran in the emergency department to get me to hold down the rest of my meds, they'll probably be irritated enough to hunt down my doc to get her to get this prior authorization done so I can get my Rx filled?? Or else what, they admit me for the purpose of giving me zofran every 8 hours?? Let them try and explain that to my insurance. I give up on trying to chase it down from my end after tonight. It's not worth making myself sick over.
thank goodness for my narcolepsy!
I forced myself to lie down between my home health aide's shifts when I would normally take my first nap of the day, even though I thought there was NO chance I could fall asleep because I was so "wired" from the stress. Well, the narcolepsy won that battle and I did drift off!! Yippee!!! I'm still tachy, flushing, and nauseated ... but everything seems an eensy bit better now that I've had a short nap and that bit of horizontal time.
I'm going to take Beema's advice and the wisdom that only a growing boy's stomach-of-steel can bring (leave it to a young man to eat like that even when he's in bed with flared up POTS and nausea!! Does ANYTHING stop them from eating?! hahaha), and do my best to eat something now and get my sodium up for the day.
I just called my insurance (yet again) and they still haven't heard from my doc so I paged the on-call service and will see if I can spur her into action that way. I suppose if I can't make this happen before the pharmacy closes at 9 tonight, I'm just going to run out of zofran and let it "go down" that way. Hitch is getting dropped off for surgery at 9 AM, so if I'm out of zofran by 6 AM and not holding down my other meds, we can just swing by the hospital and drop me off after the dog gets dropped off. I imagine if they have to administer IV zofran in the emergency department to get me to hold down the rest of my meds, they'll probably be irritated enough to hunt down my doc to get her to get this prior authorization done so I can get my Rx filled?? Or else what, they admit me for the purpose of giving me zofran every 8 hours?? Let them try and explain that to my insurance. I give up on trying to chase it down from my end after tonight. It's not worth making myself sick over.
Sorry, I don't have any answers for you. Cody's POTS is flaring up as well. He is returning to the Homebound program after attending school for 7 weeks--he hasn't been able to attend the last 3 weeks. He is nose diving and we can't seem to stop it. He has more stress not attending school, than attending. He had straight A's and said it was easy. Now he is falling behind rapidly.
Zofran never did work for him, and the third time the doctors wanted to try it, insurance then said NO! Since it never helped, I didn't care that they said no.
His doctors said the seasonal change and allergies could be effecting him. Plus, since we closed our pool for the season he isn't able to water jog which seemed to help. So, we might try the YMCA or a community indoor pool. ( He hates water though, so he is not happy,- He doesn't like changing into a swim suit, then having to dry off to change back into clothes).
One thing Cody can do though, he eats even when nauseated. I don't know how, but he does. I bring him food while he is laying down in bed and he just props up on one elbow then lays back down.
Hope you feel better and things calm down soon,
Christy
Zofran never did work for him, and the third time the doctors wanted to try it, insurance then said NO! Since it never helped, I didn't care that they said no.
His doctors said the seasonal change and allergies could be effecting him. Plus, since we closed our pool for the season he isn't able to water jog which seemed to help. So, we might try the YMCA or a community indoor pool. ( He hates water though, so he is not happy,- He doesn't like changing into a swim suit, then having to dry off to change back into clothes).
One thing Cody can do though, he eats even when nauseated. I don't know how, but he does. I bring him food while he is laying down in bed and he just props up on one elbow then lays back down.
Hope you feel better and things calm down soon,
Christy
Heiferly- ur describing my week. I could be doing this whine:) Just kidding its not funny.
As for your question on eating. Yes I have found it actually helps in the long-run if I force food. And guess this is terrible but I have found salty chips sometimes even help my nausea and gets the needed salt into me. A yr ago when I had lost a massive amt of weight on a short time my Dr goaded me into force feeding and it did help.
Do u maybe need an IV? I know u get those at times and stress really depletes our reserves.
Anyway sorry ur having a hard time and hope things settle down for u soon. By the way I got.that lovely blush going on on my face and chest too. People asked me if I am sunburned.lol
Feel better.:)
Beema
As for your question on eating. Yes I have found it actually helps in the long-run if I force food. And guess this is terrible but I have found salty chips sometimes even help my nausea and gets the needed salt into me. A yr ago when I had lost a massive amt of weight on a short time my Dr goaded me into force feeding and it did help.
Do u maybe need an IV? I know u get those at times and stress really depletes our reserves.
Anyway sorry ur having a hard time and hope things settle down for u soon. By the way I got.that lovely blush going on on my face and chest too. People asked me if I am sunburned.lol
Feel better.:)
Beema
Have an Answer?
You are reading content posted in the Autonomic Dysfunction Community
Are there grounds to recommend coffee consumption? Recent studies perk interest.
Salt in food can hurt your heart.
Get answers to your top questions about this common — but scary — symptom
How to know when chest pain may be a sign of something else
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
