Just worn down!

[sarah0683]

Hello!
I recently had a tilt table test... The diagnosis I was told 3 weeks ago was: Vasovagal syncope, Hypersensitivity to beta blockers and inappropriate sinus tachycardia. The doctor told me and had my father come in the room and explained while I was having the test done, even before I left the hospital, That I had POTS. Now they are saying otherwise...(Vasovagal syncope, Hypersensitivity to beta blockers and inappropriate sinus tachycardia.) or are these the symptoms of POTS????

I recently had an EP study because they suspected paroxysmal atrial tachycardia. The diagnosis was: inappropriate sinus tachycardia. but they did not even get my heart up to the rates it gets to when I stand! They got it as high as 130...but it goes up to 150-180 when standing! The ep study is done supine....is this accurate???

How can I have inappropriate sinus tachycardia if my resting heart rate is in the 60s - low 80s?? During my tilt test I did not faint but the doctor refused to give me isuprel (???) or isoproternol (???) while in an upright position because my heart rate was to fast...They did however give me atropine in a supine position which made my heartrate go to 185...I had a slight drop in blood pressure which I know is not necessary to give a dx of POTS.

I recently had a event monitor put on... That only lasted 3 days. I was supposed to have it on for 2 weeks. But I could not tolerate the fast heart rate  of 160 while standing ( I was fine laying with normal heart rates) and fainting. I also was having SEVERE chest pain and my left arm was going numb and seizing up.I went into emerg and was told by a doctor this is all normal.... Everyones heart rate goes up when standing...I know this is not normal. So I took the monitor off ( more like ripped it off ) and took my atenolol and propranolol. I called the cardiologist who ordered the test and told them I could not wear it. I have no one home with me to help me do my activities of daily living... I had a heard enough time getting to the washroom or even to get something to eat!!! So I am now waiting to get the results of the 3 days recordings...That will be on Oct 4th.

I am soooo frustrated..I know something is not right...and I know they need to be doing tests but I cannot tolerate being off my beta blockers for 2 weeks... I simply just cannot take care of myself when I am off of them. I get SO scared when my heart is racing. I can handle the fainting and all of the other miserable symptoms that come with it. I feel like this illness is wearing me down.... This time last year I did not care what it took for me to find out what was causing this mysterious illness that is only getting worse with time...now all I want is to sleep... I am sooo fed up with tests, doctors and being ill...I just want my life back... This illness has robbed me of everything..my independance, my confidence, my activities I enjoyed, friends and family...and the list goes on and on...I just want this all to be done with.
I have lost my faith in doctors, I have lost my faith in myself .. I do not know where to go from here..

[mtgardner]

Hi  Sarah,

If it were me I would for sure request a visit to the autonomic function lab as this woud help differentiate between conditions and would make appropriate prescribing more likely.  Some labs in the U.S. do not require a referral but my  guess is most insurance systems do require it.  I understand your not wanting to step on toes but fragile egos should not stand in the way of your getting the best evaluation possible.  As you can see from the difference in response to ablation in the article you quoted one's response will be very different depending on diagnoses so a correct and accurate one is very essential.

My experience has been some doctors and nurses are not that versed in autonomic dysfunction.  You may find yourself having to educate as you go along.  I have had my condition pretty much flippantly dismissed by a nurse with the phrase "never heard of it" as if that made it somehow not an issue. It can be frustrating.  You may have to point out for instance it is when you stand up you have problems and get them to look at your monitor when you are vertical.

I am having some difficulty tonight posting links to articles using this site.  Not sure what the problem is!  A summery I have found helpful is on the DINET site which you may have visited.  They have a lot of POTS information.  The article is entitled "What to avoid" and lists things which can make symptoms of dysautonomia worse.  It is a great one too for family and friends so they understand more what limitations go with this dx.

Another one  I have found helpful is Orthostatic Hypotension and Autonomic Failure: A Concise Guide to Diagnosis and Management by Blair Grubb, Yousuf Kanjawal, Ververly Karabin and Nasar Imran.  It is from the electrophysiology section, division of  cadiovascular medcicine, at the Health Science Campus of the University of Toledo in Toledo Ohio. Since I can't send a link you can put that title in a search engine to get there hopefully.

You mentioned having corresponded with globalhiking.  She is nothing short of phenomenal in helping find reference articles.  I too have been a fortunate recipient of her help. You will find the people on this forum share their experiences and knowledge and have many sources of helpful information.

I am glad your fiance is so understanding.  It is so important to have people in our lives who get what we are going through.  I have had to avoid doing a lot of things I once did and to learn to accept that I have to prioritize.  There is only so much energy.  Other things I have been able to modify to make them more doable.  I also get hypotensive after carbs or bigger meals so I am having more protein in the mornings and having smaller meals more frequently.  I also plan most of my activities in an area of the day when I do better.    I try to cook so there is enough for 2-3 days to cut down on actual cooking time and like to have somethings available I can just grab easily.   I try to get my meds three months at a time so I am not always having to go get them.  I use sprinklers for some of my gardens now so I don't have to stand long periods watering.  I have chairs with footrests set-up in several places including outdoors as I fare better having my feet up then down.  I try to space things out so I am not doing everything in one day.
I know others who get help with some of their work.  I am not sure if where you are you might qualify for in home help or part-time care.  Even paying someone to come in a few hours a week might be helpful.

I will get this off to you.  Let me know how you are doing and how things go.  Marie

[sarah0683]

I just found this in one of my previous posts just prior to my EP study from globalhiking

"I got this from one of Dr Grubb article -

✴ SIMILARITIES
Both conditions have the same presenting symptoms, and both afflict women predominantly. In both conditions, individuals will display an exaggerated response to Isoproperenol infusion.

✴ DIFFERENCES
In POTS  - The variations in heart rate on change of position is more pronounced.
               - At rest, the heart rate rarely goes beyond 100 beats/minute

In IST      - At rest, the resting heart rate is often greater than 100 beats/minute  
               - The change in the serum norepinephrine levels is not as marked on change of
                    position as it is for the hyperadrenergic type of POTS.

He goes on saying that -

It is extremely important to differentiate between these two conditions, as the treatment options are quite different.
In particular, ‘radiofrequency catheter ablation’ of the sinus node can make individuals with partial dysautonomia type of POTS much worse, and does not seem to help individuals with the hyperadrenergic type of POTS. "

[sarah0683]

Hi Marie, It is very nice to speak with you. I am being seen by a cardiologist, electrophysiologist and a few other doctors that work alongside my cardiologist and EP. I also was seen by a doctor while staying in the hospital and I am not sure what he was labelled as but he was the doctor who did my tilt test. I assume he was another cardiologist because I remember he was speaking with someone about a pacemaker surgery he had just implanted before seeing me.

I really had my hopes up on getting a referral to a autonomic specialist / cardiologist at another hospital inHamilton, Ontario for a second opinion Dr Morillo, But I found out today he also works out of the hospital I am currently going to and works alongside the cardiologist I currently see. He actually funded the first Autonomic Lab in Hamilton! So I am not sure if asking for a referral to see him would be stepping on any toes. And to be honest I am not sure how happy my cardiologist will be with me after taking the heart monitor off this last Saturday.

I do know the doctor I saw in emergency this last Saturday was not concerned at all with it... and the nurse I saw in triage did not even write it on my chart NOR did she write I was experiencing chest pain!!! So needless to say I sat in a hospital bed for 4 hours before even seeing anyone! The EKG was done supine, my bp was done supine and they look at me funny because everything looks normal... Providing I am laying down. And well I got told numerous times that night. And like I mentioned when she did finally stand me up she said "everyones heart increases when they stand"...."Your 27 years old, Nothing can be wrong with your heart"....Yes, I agree, I am 27 years old and nothing may be wrong with my heart but there IS something wrong somewhere...

I do have family and a fiance to help out but they both work night shifts and as hard as it is I have had to learn to be pretty self reliant with this illness. I try and cope as best as I can. And try and just take it day by day but seems to be getting to be too much lately.

My doctors have not tried any new medications yet because they seem to have not come to a conclusion as to what it is. It seems like all 3 doctors have their own ideas of what it is but do not communicate with each other to come up with any answers.

Funny enough I just found my patient discharge letter that states Diagnosis: orthostatic hypotension (they did a poor mans tilt when I was admitted for the week I mentioned above) because my blood pressure dropped a bit when they stood me up and my heart rate climbed to 145 from my normal resting heart rate (which is pretty low as also mentioned above). This was prior to the tilt test. And they said on my Ablation report I had underwent full autonomic testing.... Is this the only test??

I do have a inappropriate rise in heart rate it seems like only when I stand. It climbs when I sit up but does not get too bad and uncomfortable until immediately after I stand up. ekgs state its sinus rhythm or SV rhythm (not sure what that means) I have pvcs, the heart monitor I had on saturday when my arm went numb said PVC pairs, PVC r-on-t, and PVC - multifocal. But the doctors tell me not to worry about these extra beats they are benign.... So as uncomfortable as they are I try to ignore them.

I would very much appreciate it if you could refer me to some articles, That would be great!

Thank you very much for your kind words, I find this forum a very helpful place to talk with people! Its reassuring to read the posts and realise I am not the only person going through this type of thing....although it sure does feel like it sometimes.

[mtgardner]

Hi Sarah,

I just wanted to say hello as I had don't believe we have  talked before.  I have a different diagnoses from you, mine at the present time is Pure Autonomic Failure because on the tilt table test my BP dropped very low and my heart did not speed up to compensate for it. Doctor's talking about my response could also describe it as postural hypotension with no compensatory increase in heart rate.  I think sometimes there are more then one way to say things and that may be what you are experiencing.  My heart rate response does not seem inappropriate when I am not active or having the hypotension it is then it becomes inappropriate.  In my case activity such as trying to walk uphill will not cause my heart to speed up...supposedly I have lost that innervation.  Instead my respiratory rate first deepens then it too speeds up. So your inappropriate heart rate happens under certain conditions.

I do not like the symptom of your left arm numbness and chest pain.  That would seem like a red flag to me too.

When I got my diagnoses I was overwhelmed.  I also was having a lot of skipped beats due to two meds I was taking...and my BP seemed all over the place as I weaned off my old BP meds.  You sound like you are in a similar place right now...overwhelmed by all that is going on and not feeling well too.  In addition you had the demands of being off meds that help you.  I am hoping one of the POTS people who will have more knowledge of the physiology and how tests are done will comment on this part.

Your doctors need to know that you have no one to help you and off your meds you can't function.  I do know that once I was off the meds I spoke about and off my BP meds which had to be weaned off slowly as my BP dropped, I have felt better in many ways.  I am hoping that for you something like that helps too.  You need to feel heard by your doctors and you need to understand what in your system is problematic.

I have not been to an autonomic lab yet.  I hope to get to one in the future.  I am not  sure if there is one near you or if you have specialists in your area.  I think one of the hardest parts is the way we feel while we wait for this test and that to reveal things.  

I am also wondering if there are any relatives that might help...or if you have any service organizations in your area that might help.  

This is a good place to get information and support.  I have learned a lot here and the forum participants have all their collective experiences to share.  Know you are not alone...and that there are things that can help...plus new meds coming out next year and in the future.

Have you read much about your diagnoses or would you like us to refer you to some articles?  I have quite a few I found helpful that might be for you as well.

I am glad you came here and I hope you  can find resources both where you live and here on line.  It is nice to meet you and I hope things settle down for you soon and you get more answers.....Marie