Hello peoples! My name is Amber and I am 28yrs old and I was recently diagnosed with POTS. I am one of those people that is slowly declining. My symptoms have been gradually increasing since I was 20 as far as I can recall. Anyway, my question is how long do I have til I will not be able to do hardly anything all week long?
I was, up until last year, a full time RN nursing student, had a full time physically demanding job, and a single mother of two children and I was able to kinda handle that. Aside from a 4 day stint throwing up blood in the hosp from the stress. I had an EP study in feb and that made my condition much worse somehow. I am only one year away from obtaining my nursing degree and its what I have wanted to do with my life for so long and I feel like i'm loosing a big part of myself. I don't know If I will ever be able to handle the physical stress of completing nursing school and if i can complete it somehow will I be able to work as a nurse afterwards?
Just actually putting that I may not ever be able to out there makes me wanna cry now. So has anyone out there still kept working or continued their education with this disease? I am taking online classes to keep in the college game so if I can go back I won't be outta practice. And anyone that has the slowly progressing form of the disease, how long until full symptoms came on? Thank you in advance for any advice!
My son's was slowly progressed until it became a daily event. It only took him about 3.5 years to go from sick, to frequently sick to sick daily. His started in the 5th grade and in the middle of his 8th grade year he stopped attending school. He did not attend his 9th grade year, but has made great improvement since August and is now attending school for 4 hours a day and taking 2 on line classes as well.
The medications he was on had given him some improvement and after upping the doses in March he had more improvement and upping them again in August he is doing even much better. He is still sick first thing in the morning, mainly nausea, but by lunch it subsides or is gone.
So while his slowly progressed, with the right medications for him, he has taken a turn for the better in the last month.
Thank you for some encouragement. It's good to know that even with the slow onset type recovery is possible. Everything I've read has said that generally with slow onset and the hyperadrenergic form that I have is likely to last a life time. I hope once they get my meds regulated that I will get better. It's been 8 years now and I have only gotten worse over time, of course I wasn't diagnosed until two weeks ago.
I am loving having this forum to go to now. It's been really hard to accept all of this and it's nice to have people to talk to and who have been through this. I find it to be a struggle to explain what i'm going through to anyone who has not expirenced it. It just seems as though I'm lazy to most people. My boyfriend is finally coming around. I think him seeing me looking very pale and almost pass out several times helps. He sometimes can see it before I feel it. My worst thing is the dizzyness!!!!! I hate it. I'm on beta blockers and thats all right now. My blood pressure goes up instead of down. So I don't know if I will be doing the same meds as some of the other POTS patients.
I go see my Cardiologist on Wednesday and I'm scheduled to do a treadmill stress test before I see him at 11am. Kinda worried about that, I don't think I will fare to well post exercise. I have no idea why he wants to still do this test? I saw him about three weeks ago and he scheduled it then and i requested the tilt table test, I did it two weeks ago but even after that he wants to continue with the stress test. I hope I don't pass out while on it. Could be dangerous I think.
Sorry, i'm rambling. I just have so many questions and thoughts since I'm newly diagnosed. Makes me wish I payed better attention in class when we were covering the nervous system, but no, I was set on specializing in pediatric oncology.
I'm so glad to hear your son is doing better and I have the fondest of wishes for his continued recovery!!!!!! Thank you for taking time to give me some insight.
My son takes fludrocortisone for dizziness. His bp also goes up instead of down. They just reduced his fludrocortisone to see if that helps lower his bp. It can go really high just standing up.
My son's heart rate went up to 169 just kicking a soccer ball for 10 minutes, no running or anything. So any physical activity makes it go up.
Don't give up, even after diagnosis, it took us almost a full year to find the right medication and dosage. He saw progress with doxepin, then they had to figure out the dosage. He still has his days where it takes him longer to come around, but they aren't as bad as they were.
Just keep going through the trial and error process.
We will see what doc wants to put me on on Wednesday. Haven't had an office visit with him yet just the tilt test. I understand that it can take a long time to get the right medicines and titrate them to the right levels once they find them. I can accept that and wait it out. Anything that helps is worth the wait.
My heart rate was 163 today after just taking a shower and I didn't even shave. lol. So i understand the physical activity thing well! I have been on several different beta blockers since I was 21 for HBP. So I'm pretty familiar with them, the current one I'm on is bisoprolol. Doc also has me on Diltiazem a calcium channel blocker. Even with that my HR gets pretty high. I did a self laying/standing test today and went from 74 to 133 by 10 min standing. However, My HR doesn't steadily climb the whole time I'm standing. It goes up and down btwn 120-140's. Is that normal? I also have good days and bad days. Some days my heart never really gets very high and others I can do hardly nothing and it sky rockets. I'm sure that's common.
I have taken a cortico steriod like fludrococtisone before for treatment of adrenal insufiency. I had a lot of improvement on them but they are dangerous to take for long periods of time because they weaken the immune system. So I only take them when I'm ill (flu or infection) and the doc starts me off on high doses and slowly lowers them to none again. Maybe if I started on them daily that would help. I'll ask him about it. Thank you so much!!!
I am sorry ur having such s hard time. I was an RN and was forced to stop working did to ms and AD.:( I loved my career! Has been hard to accept so I understand.
I am told I.have NCS. My bp goes high. I am on 4 bp Meds. I take a betablocker and cardizem too. My heart now runs in 40s and 50s occasionally up in 60s since Dr added betablocker. I have passed out a few times and my bp was so low they couldnt find it. Even though heartrates down I can't do anything without having presyncope.
It's so frustrating! I hope they can find right meds for u. U sound like u will.be an excellent nurse.
Thank you so much for the compliment!!! I hope to be an excellent RN someday, It really is my passion! NCS is Neurally mediated cardiogenic syncope right? It sounds like you are on to many BP meds now. Maybe they should cut u back a bit???
It must have been heart breaking to have to quit your job from illness. I don't know about you but I can't think of anything else I want to do with my life. I have been thinking about it recently now and I just draw a blank. I'm a caregiver, it's in my nature as with most nurses. U have to want it bad to go through the tourment of nursing school and pass! But if need be I will find something else to do that I can sitting or laying down. What do you do now that your retired?
Compared to some of the stories I've read I really don't think I have it so bad anymore. It could be way worse. I still have a lot of good days and my bad days aren't to terrible bad. But still bad enough to have to quit RN classes. :( My school is an hour and a half away and just the drive alone would wear me out. I live way out in BFE Oklahoma.
I'm fixing to research on where to find the closest Dysautonomia testing center to me. My doctor is awesome and I love him but he is not an expert on POTS just a cardiologist, Chief of Cardiology at OU hosp but still not specialized in POTS. I'm hoping that by being proactive that i can stop this before it gets to bad!!! Head off the being bed ridden thing and finish my Degree!!!!!!
Hi there :)
I suspect your Cardiologist is still having you do the treadmill/stress test to see if your heart itself is healthy. I had to do it as well, in addition to an echocardiogram and the tilt table test. Everything checked out great concerning the condition of my heart but during the tilt table test I passed out and was diagnosed with Neurocardiogenic syncope. I believe I was diagnosed with that instead of POTS because my heart rate went down, not up during the test. I have to double check that, but I'm pretty sure that's how it went. That tilt table test was not fun, but besides showing I was woefully out of shape and did no exersize, the treadmill/stress test wasn't bad at all. Just a little embarrassing :) Hope it goes well for you!
I too "just have a Cardiologist". Nice guy who is trying to help me, but by his own admission, he has not had alot of dealings with NCS but said he thinks we should give it a go before I consult a special autonomic disease center. I'm ok with that for now, so I'm going to see how it goes. Do you have a Neurologist too?
I would love to cut back bp Meds but Drs afraid if.they do bp will go berserk as it still goes very high at times.
I really don't do anything as seem to lose more function each day partly from ms but also from syncope and presyncope. Had to leave grocery store tonight usual tonight and let my dh finish as knew I was headed for my face meeting floor if.I.didn't get feet up. So frustrating.
Wichita has some good electrophysiologists. I don't know how far ur from there.
Now that u have a diagnosis it will be easier for your Drs to help u. Don't stress over stress test. Ur monitored closely and will do ok and.it can give Dr valuable information as to your treatment plan.
I do have a neurologist but he is seeing me for a diagnosis of Adrenmyeloneuropathy or AMN. I now think that this is another wrong diagnosis. So I will have to talk with him about it. I need to make an appointment with him. It has been a long and frustrating journey to finally get the right diagnosis. As it has with most people I hear.
Why was your stress test so embarrassing? I am also outta shape due to the exercise intollerence. But my understanding is the objective is to get you to your max HR and by the calculations mine is 162. I don't think it will take me long to get there. Or at least I hope not. I'm mainly worried about passing out on the treadmill. I don't feel so well when my HR is that high and passing out is a very real possibility.
I really do like my Cardiologist so I don't want to get rid of him or anything, i just think that having the autonomic testing will be benificial in addition to him? Maybe I should not be so worried and just stay the course, I don't know. I will see what he has to say Wed. The hospital i go to is very good!!! So maybe he will have someone to work with there who has expierence with POTS.
Oh, I didn't know that your BP also got high. That must be frustrating. Maybe a pacemaker would help with the low HR. I've read that with other forms of tachycardia sometimes the meds make the HR to low and they keep the meds and place a pacemaker in to keep HR in check. I know heart surgery is not exactly a great option, but you might wanna check into it. If it can keep your BP down and HR up maybe the NCS will subside?? Just a thought.
I don't have MS but I was diagnosed with AMN and its comprable to MS, I had an MRI showing some demylentation in areas. As I said above going to check on that diagnosis not sure if its accurate. I hope its not and its just the POTS. Probably just wishful thinking.
Glad to hear I'm monitored closely on the stress test. I will try not to stress about it so much. I'm so anxious to see my doc again now, I have so many ?'s and I'm ready to get started on treatment so I can maybe one day feel well again! I hope you find some answers and can get on the road to recovery!!
Pacemacker is a thought. They would like to.cut betablocker back due to low.heartrate. Mostly my bp is low now.except in Dr office but tonight for some reason is up again. This dysautonomia is just so.weird and unpredictable. Hope u find answers soon. Somedays I just feel like giving up but I am too stubborn.lol
It's good to be stubborn!!! I don't know how anyone would get through this without a bit of stubborness? lol. I agree on the weird and unpredictable thing. I never know what I'm going to come up with as a symptom next but I'm sure something will pop up. It always does.
I think I'm becoming addicted to this site. lol. I go here more than facebook now. It's so cool to be able to offer help to others and get answers. Maybe after I have lived with this for a while I won't be so inquizitive and be more helpful to other people.
My stress test was just embarrassing because I'm so out of shape...and I was jiggling all over the place, lol! I always felt so lazy about not exercising and it was quite apparent that I didn't. The Cardiologist even said "you don't exercise much do you?"
Really, try not to worry too much about the test. The Cardiologist and the other staff will be there and will be watch you carefully. Let us know how it goes.
You may want to ask if it would be an option to do a cardiopulmonary stress test rather than the plain treadmill stress test. Getting your VO2 level on top of the other data and guidance on where your exercise intolerance maxes out (METs). Or that could be something you ask about having done in the future if you can't switch and get that test now. Also, for either the regular or cardiopulmonary stress test, you may be able to ask them to do the test on a recumbent bike rather than on a treadmill: ask!!
My first two stress tests were on treadmills and I'll admit—I wasn't a fan. The third time, when I had a cardiopulmonary stress test, the facility was experienced with a small handful of former dysautonomia/POTS patients and it made a WORLD of difference. They put me on a recumbent bike to alleviate the orthostatic stress element and alleviate my fears of falling and getting injured should I faint; they placed two gym mats alongside the bike as a "crash pad" at the ready and told me to signal at the slightest indication that I needed to lie down (I did start to faint and they were VERY quick at swooping me up and lying me down on the mats); they had an RN present and right at my side throughout the test to watch my face for signs of me taking a turn for the worse and check my BP very frequently in addition to the person monitoring my vitals from the monitor screen; and my home health aide was also in the room to instruct and assist.
The farthest west fully-equipped autonomic testing clinic is at Mayo in Rochester Minnesota. If I remember my US map correctly, I think the closest to Oklahoma is the one in Tennessee at Vanderbilt University's Hospital:
You may be able to find some of the more widely-available tests at a limited number of hospitals other than these, but these are the ones with the whole shebang, so to speak (and some world-renowned syncope/autonomic specialists, too).
I think, as others here have indicated, those of us with progressive cases tend to try to run uphill in terms of treatment. The progressive nature of the illness may leave you feeling at times as if you're careening downhill in a runaway car, but there always seem to be new medications and treatments around the corner to try and you just keep running uphill as fast as you can ... there is definitely hope that one can hold ground, and possibly even make uphill progress with the help of the right doctors and perhaps a bit of luck. Every case is different; the common thread in those who do best is finding a doctor who refuses to give up on you, and remembering never to give up on yourself.
I'm thrilled that you've found our little corner of the internet, and look forward to getting to know you.
OMG Heiferly...thank you for that link to the specialists! One is in my backyard in Valhalla NY. Now to see if he treats adults as well as children. I always felt lucky to live in NY where alot of specialists seem to be!
Thank you so very much for the advice on the stress test and the list of hospitals and docs!!!!!!!! I will absolutely ask for the recumbent bike! I never even thought of that as an option. I'm sure they will take precautions to prevent injury in the event of my fainting the hospital and my doc are very good and understanding. I will mention to mats also.
I will never give up on my uphill battle! I am way to stubborn and hard headed to give up at anything. One of my first sentences when I was a kid was "I do it myself!" and i have maintained that I can do it and I will do it attitude my whole life.
Well I'm gonna go check this link out and get some numbers so I can make some calls Monday. Or maybe I should ask my Doc which of the places he would recomend. Thank you again!!!
I haven't had the energy to get on here since yesterday and let everyone know how my apt went. So, here it goes.... Wednesday morning drove 2 and a half hours to where my Doctor/hosp is and did my stress test. They did not have a recumbent bike but after explianing to the nurse that syncope was a very real possibility for me she got two other nurses to come in and stand by me and she put a mat down on the floor behind the treadmill. So that was reassuring. I made it a whopping 7 min and 11 sec on the treadmill and my heart rate was 194. I wasn't even jogging yet just a fast walk. It was so sad to see where I was to where I am now. I turned white and got dizzy and they decided to stop it. After my test was over the nurse said I would say you are highly deconditioned, a 28yr should be able to do much more. I told her um yea u think??? Ever thought maybe thats why I'm at a Heart hospital. Stupid people!!! I guess I didn't explain my need for syncope watchers well enough!
After that was over I waited to see my doc for an hour downing as much water as I could get my hands on while waiting. NPO for the morning and I was so thirsty. When I finally saw him he confirmed my prelim POTS diagnosis and gave me a script for Florinef .1mg daily. I was really impressed with him, he said he really didn't know much about POTS before I suggested the tilt test but he had obviously done research on it. He was very well versed on it when we were talking. It seemed he had read as much info as I have on it and that's very impressive to me!!! I think I'll keep him!!! :) He said we will try this med first and if its not effective then we will do the midrodine and he also wants to do a 24hr urine collection for some adrenaline levels in a month when I come back to see him. I know the name of that test but it alludes me at the moment. So I think i'm on the right track now and I'm keeping my fingers crossed for the florinef to work or at least help. After both apts we drove the two and a half hours back home and I've been exhausted since. But I think I will be better tomorrow. Hope all is well with all of you also!!!!
Even though it was hard on u sounds like your trip was productive. Also am glad u have a Dr who apparently actually listens and cares. Sounds like a keeper to me.
I have had to be NPO for.my stress tests but not liquids. Was encouraged to.drink as much clear liquids as I 'could.
Now rest and recoup.:)
Sorry I am late to post to you.....For some reason this Post or my mind has eluded me..Lol
Glad that you got your test and test results. I can Certainly understand your Energy Decline! I too, Like Beema, have MS also so I get so confused if the Energy Decline is more from the AD or the MS! What I do Know...is that my Energy Decline is affecting my life dramatically! It makes me very sad to see myself in this condition.
I am in hopes that the Florinef will be a good fit for you. Just remember that sometimes it can take a bit to get the right meds and the right dose down. So don't get discouraged :) Hopefully this will not be the case for you and you will hit the "Bulls Eye" first time out.
Be careful if you are still driving as you would not want to get into either a PreSyncope or Syncope Mode while behind the wheel. Lastly, just my own suggestion from experience....others may agree......DON'T push yourself! If you are feeling tired, dizzy, weird, whatever....then Lay Down! This is your body telling you....Time to lay down, rest, and Re-Hydrate. Also avoid those HOT Showers and get a shower chair.
A medical worker told me after a treadmill test- I wouldn't go out and join a gym tomorrow if I were you- something like that. It sounds like a doctor who really cares about his patients that he would take time to read up on it after telling you he didn't know that much about it. A long trip for you, but does sound like a promising type of doctor. You might take a look at this thread on midodrine:
So glad to hear you found such a great doc. I hope the florinef works for you but if not, good news...they changed their mind about Midodrine. Heiferly's post was updated with the info. in that same thread.
You sound exactly like me... I'm 99% positive that I have the hyperadrenergic form of POTS but haven't been to a doctor who even knows what that means... How did you find out that you had the hyperadrenergic form? What symptoms specifically led you to that? Since your experience sound just like me, I will share that I was on a beta blocker-toprol-for years. At first it seemed to help, then it's effectiveness peaked and then dropped completely. Finally I decided just to go off of it. As soon as I got off of it I started sleeping *much* better (I was insanely insomniac, now I'm just a little insomniac). I've read that Florinef is meant for the standard POTS where bp drops bc it helps specifically prevent that. So with hyperadrenergic I'm curious if it actually helps or not.
Anyway, I'm going to the Cleveland Clinic in Ohio in a few weeks (I'm sooo excited about that... and I'm nervous that I'm excited bc I don't want to get my hopes up *again*!) They are going to do some tests that aren't really available elsewhere, hemodynamics testing, and heart rate variability testing. I'll let you know how that goes.
Glad you found this forum! I was a 'lurker' too for a while but talking to other people that get it has been the best medicine for me... literally...
Sorry I'm late to reply, I have been super tired. I'm sure every single one of you can relate!! :) One of my favorite things about this forum!
LaLa - My "hyperadrenergic" has not been confirmed yet. The 24 hour urine metanephrines test my doc wants to do is to confirm it. However he and I are pretty sure it is this type. I have two relatives with the confirmed Hyperadrenergic form of POTS and all of the symptoms fit i.e.. frequent urination, family hx and such. My cousin was diagnosed at the Mayo Clinic and I'm not sure how they confirmed his. He said they did a whole slew of testing. The florinef is maybe helping a little. It's only my 3rd day on it so I don't have a great deal of expirence with it yet. I do know it makes my nausea worse and causes some stomach pain for me but nothing unbearable. Also it has made the insomnia a little worse. But like I said it is only my 3rd day and I haven't given it a fair chance to say weather it is working or not. I have also been on beta blockers for a long time. I started them when I was 21 for HBP. started with metoperol then atenolol now bisoprolol. Since I have been on them so long I don't really know the effectiveness on my POTS. it may be much worse if I were to stop them. My doctor explained to me that even with the H form of POTS he wanted to try the Florinef because essentially they have the same actions in the body in all types. the blood pools in the legs and the brain looses blood profussion. So he wants to try "filling up the tank" so to speak so that when i stand I will have enough blood volume to maintain blood to my brain. Sounds good in theory. I hope every thing goes great for you at the Cleveland Clinic. I'm excited for you too!!!!
Stephanie - thanks for the update on the midodrine. That is my next step if the florinef doesn't work or just in addition to it. Glad they didn't drop that med. We can't afford to loose options with as little as there is already!!!
SurgiMen - Hey girl, He really is an awesome doctor!!!! He is the Chief of Cardiology at OU Hospital his speciality is EP. He is very elderly and I'm fearfull that he may retire soon. I'm praying that doesn't happen, but even if it does I have faith that he will send me to an equally understanding and supportive collegue. Thank u for all of you continued support. I always get so happy to hear from you!!!
Tonya - The energy decline is horrible! I'm still very young and it just doesn't seem fair most of the time. But I will live to fight another day. I do not drive at all if I don't feel great! As a matter of fact as we speak my boyfriend is on his way to pick up my daughter from her grandparents house because I did not feel well this morning. I have never passed out while sitting but there is a first time for everything and I would hate for that time to be in a moving vehicle. I need to look into getting a shower chair! It seems that shower time is problematic for most of us. In fact the first time I ever passed out was in the shower. I was visiting a friend out of state and fortunatley I was upstairs so they heard the loud thump! It's a good thing that being supine revives us AD peoples or we might have several bathtub drownings. Maybe Floaties should be added to our protective armor!!! :P
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