Dysautonomia (Autonomic Dysfunction) Community
DX of POTS 2 months ago
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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DX of POTS 2 months ago

Hi Everyone.  I was recently diagnosed with POTS about 2 months ago.  I had worn a heart monitor for 3 weeks and my heart rate went as high as 185.  My cardiologist then referred me to an electrophysiologist.  I then took a tilt table test and passed out in 4 minutes.  The EP said has never been more positive about a POTS diagnosis for me.  So anyways I was started on Florinef 0.1 mg and I could not tolerate the side effects.  I also have Chiari Malformation - so the Florinef was causing too much intracranial pressure and I was taken off the meds within 2 weeks.  I had another tilt table test and ofcourse passed out again just to see if the Florinef did anything at all, but needless to say I passed out again.. this time instead of 4 minutes it was 20 minutes (but I had compression stockings on for this test and the first one I did not). So now I have been on Midodrine 5mg 3x a day for about 2.5 weeks.  It does not seem to help with my BP much.. maybe a little but I still feel horrible and my heart rate still goes up in the 140's.  I've come to see that Florinef and Midodrene seem to be the most popular meds for POTS, but neither have seemed to work for me.. I have been out of work for 3 months and I just want to get back to a normal pay since I have a mortgage, bills and a 21/2 year old daughter!.....  Any advice, similar experiences, and talk about work issues would be great!

Thanks everyone =)
17 Comments Post a Comment
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875426_tn?1325532016
Wow, your heart rate really got up there during the monitoring!  Are they discussing surgery regarding your Chiari's malformation?

I think you are right about Midodine and Florinef- they do seem to be the most popular.  I had side effects from both and quit them.  There was another medication suggested to me- one called Lanoxin for slowing the heart rate, but then there's danger of poisoning if it builds up in the body, which sounds scary so I don't want to go on it unless I really would have to.

If you feel you can still work, I would think your job would need to be very sedentary given the severity of your symptoms.  What about working from home?  
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4703993_tn?1379771988
I actually am in the process of being scheduled to go to the Chiari Institute soon to see what they think about surgery.

Wow the Lanoxin sounds pretty dangerous.  Both the Florinef and Midodrine are not working for me so I will see what the EP says next Tuesday.  

I want to go back to work but the severe exhaustion the constant dizziness, weakness and nausea are horrible.  I don't think I could honestly make it through the day.  Plus all of the other symptoms the POTS and Chiari give me.

In my field I have no option of working from home either and what is really horrible is I have a great job and just got my degree in October - which would allow for a higher salary, but I had been on short term disability since December..  This is so confusing and aggravating.  My neuro won't clear me and I doubt the EP will either since the medicine is having no effect and I was not able to tolerate the Florinef.  I don't want to lose my job, but I am in a lose lose situation right now..
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875426_tn?1325532016
Wow, you are in a rough situation and how daunting to have just gotten a degree and have a great job and be facing this.  I do hope you can get in quickly re: the Chiari's!
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4703993_tn?1379771988
Yeah it is a pretty rough situation... I want to go back to work but honestly don't feel I can, but maybe if these Dr's can figure something out they can get me back before I lose my job.. if not I guess I have no choice, but to try for SSD
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875426_tn?1325532016
Let me know how your appointment goes?
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4703993_tn?1379771988
Sure will update you Tuesday or wednesday
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875426_tn?1325532016
Thanks!
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4703993_tn?1379771988
Sorry.. Have not been feeling well at all so I have not been on the computer.. Well the EP increased my Midodrine to 7.5 mg a day and added Atenolol 12.5mg.  The Atenolol did not agree with me at all!  It put my bp down to 88/49 and pulse to 45 when I was resting... I called the EP the same day and she said to discontinue to Atenolol and go back to Midodrine 5mg and ordered a heart monitor for me.  I already did one in August of 2012 and it showed HR from 54-180 over 3 weeks.  I should be getting the monitor in a few days and have to wear it for only 2 weeks this time and then the EP wants me to give the Atenolol a try again the first day I wear the heart monitor so she can see what is happening... I am not looking forward to it b/c Atenolol made me feel horrible!! .. Ughh what a process, but I hope the EP see's it is no good for me and tries something different!  
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875426_tn?1325532016
I'm sorry you've not been well.  I would want a second opinion on trying the Atenolol again if it were me.  Does she not trust you when you tell her how low your numbers were that she wants to see you have bradycardia for herself?  It sounds like endangering the welfare of her patient to me and doing it with an even lower dose of the blood pressure raising Midodrine at the same time?  This does not make sense to me.  Please get a second opinion about this.  
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4703993_tn?1379771988
My family has been saying the same exact thing! .. She has my records from my old heart monitor.. but the lowest it shows is a HR of 54...  She seemed to feel that 40 or below is something to be concerned about but I mean come on 45 is pretty close and my BP was very low... When my heart monitor comes and I call her I will express my concerns about trying the Atenolol again and see what she says and go from there.. I live in Staten Island .. so I was looking all over NYC and there are many DR's that specialize in dysautonamia.  I called over 18 drs .. a lot are not accepting new patients, a lot do not take my insurance, and a few I am waiting for a call back. So keeping my fingers crossed that I get a call back from someone soon!...
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875426_tn?1325532016
About those you are waiting for call backs on- a lot of times, the squeaky wheel gets the grease, so it may be worth calling them back again!  I do hope you find another doctor.  The point is not how low your pulse can go but to help you and you felt terrible on Atenelol, even with a higher dose of Midodrine in you, so what does she want to do- see if it will not only make you feel miserable but actually kill you to have a lower dose of Midodrine and take Atenelol again?  Why don't you just tell her for yourself and your family you do not want to try the Atenelol again because it made you feel worse, not better?  She can't force you take it- patients have rights.
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875426_tn?1325532016
correction-Oops- I mean, she can't force you TO take it.

Stick up for yourself, girl!  I was talking angrily to my mom about your situation yesterday.  This seems utterly ridiculous to me.
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I feel for you; and can only add support. I
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Sorry.. Hit enter too soon..

I had to get Disability too. And like you, had graduated with a degree, had my dream job, and became sick overnight within a year of graduating.

My symptoms literally hit in an hour. I passed out with no warning, hadn't been sick at all, and ended up bedridden for almost 6 months. I lost 40 pounds the first month or so.

I got my POTS dx, and started Metaprolol, and started feeling better. My tilt test was bad. HR was 120 starting. It shot to 150 within a minute, they stopped the test at 186, about 6 minutes in.

I haven't gotten to experiment with medicines, because I lost my insurance before getting to see a specialist. There are none in my state.

Nothing brings my HR below 110. I haven't experienced low heart rates like yours.

My BP is low, but not super low. With compression stockings, it will be 70/50 or 80/60. But I do have fainting episodes, and dizziness.

Of course during my 48 hour monitor, I had some low BP, but no fainting spells to determine how low it got with those spells.

Here is what stinks. Although I haven't been treated for pots except with the Metaprolol by the cardiologist who admitted he knew nothing, and I needed to go out of state, I have taken some meds that are listed on sites as helping. Ritalin, Celexa, salt, etc.

The only med that brings my BP to a good 100/80, and I feel less dizzy, is Percocet, which I have PRN for ruptured discs. Well, obviously I can't take pain meds everyday, but it really stinks that it helps the POTS too. ( And is addictive, therefore I won't take everyday, and like I said, not given for Pots but works) when I say works, I mean I am not too dizzy to get out of bed.. Not works well enough to live life normally. But huge difference.

Another forum I was on recently had a post by a girl who said Tramadol was the only thing that helped her. She was under care if a good specialist, who gave her that.

I am 4 years post diagnosis, however, until recently, I haven't been proactive in my illness. After the first spell, I stabilized enough to live ok. Then, in the past year I went downhill badly. I blame that on myself for not reading enough about it when I was first diagnosed, and forcing my Drs into action while I still had insurance.

I just came out of a very bad two months. I let myself get very depressed. I am finally pulling myself out of that. I found some websites with good info. Found a couple forums like this one. I came to the rather late conclusion, knowledge is power here. Reading all you can, looking at the latest testing going on, talking with others, and insisting on more aggressive treatments with your Dr is vital. I will be armed to the teeth with info when I finally do get out of state to a Dr.

Your Dx is two months old. Fight hard now. Don't do what I did, put it on the back burner when I came out of that first spell. And educate other's as much as you can. It's hard enough being sick. Bit to be sick and nobody around you, including a lot of Dr's not understanding can get depressing.

I finally just last week assembled some info about this and emailed it to my friends and family. I received many responses "I had no idea". All my friends basically knew was that I could no longer make plans. If they wanted to go see a movie on a Friday, I couldn't say yes or no until almost time to go. So it helped them to understand I wasn't just abandoning our friendships.

Not everyone is a sick as I am, and I had a couple good years. I am responsible for getting some more good ones in the future.

If you feel to sick to work, start the disability process. I waited a year and a half. It doesn't mean you won't ever go back to work, but stress must be avoided when possible. And we all know finance is a huge stress.

I'm not sure if you know this, I didn't, but even awarded total disability, you are allowed to work part time, or earn so much money a month if you're able. I hate not working, but I'm not even able to work 10 hours a week. I may have 10 good hours, but I never know when they will be. So I started direct sales. It helps mentally a lot. I at least feel I'm doing something! My different Drs office staff are good customers now!

About your heart rate: This floored me, but my husband had some kind of episode last year where we would up in the ER. He had very high blood pressure, and a pulse ranging 36-50.
We never found out what it was, but I was concerned with the low HR. the Dr said, it's great! Your heart only has so many beats in it in a lifetime, the less it beats per minute while still doing its job the better. Sounds good in theory, but I still felt funny Leavung the ER with his BP back to normal but a HR of 40! I'm not sure about all that!

I am going to find specialist out of state too. I can buy Medicare soon.
Until then I pay cash so I don't get to go often. I alternative the gastro, GP, neuro and cardio every month, with only the GP and cardiologist knowing what pots is, the basics anyway. The neuro and gastro have never heard of it.

I hope you feel better soon! If you have any questions about what I wrote in my disability application ( after the initial one online, they send you a more detailed one) feel free to message me.
:)





What stinks
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4703993_tn?1379771988
I totally understand..  I am going to call her as soon as I get my heart monitor ..which should be today or tomorrow and explain to her how I disagree with the Atenolol..  Her attitude seemed to be well if your HR gets below 40 or bp in the 80's go to the ER!... Like that is your best option?! Well I will def update when I finally get this monitor...
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4703993_tn?1379771988
Thanks for sharing your story with me... My family thinks  I should apply for SSD, but I am very hesitent - I guess I am hoping they will find something to make me feel normal again... Plus I am only 26-- pretty young for disability.  How old were you when you applied?  and I am definitely interesed to see what  you wrote on your SSD application!.. That would be sooooo helpful to say the least! If you can send it to me I would appreciate it!
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875426_tn?1325532016
I plan to look for your update!  Thanks!
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