Dysautonomia (Autonomic Dysfunction) Community
Dysautonomia?
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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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Dysautonomia?

Hi guys! I’m female, about 120 lbs, 5.4” tall. I’ve had Syncope and pre-syncope since my early 20’s and I’m 35 yrs old now. I’ve had 4-5 of these/year ?( not exactly sure how many because I never kept a track) but this year I’ve been keeping a track and I have had 4 pre-syncopes , 1 full blown Syncope, 1 where I don’t know if I lost consciousness or not (because I had already lied down) . During these episodes I have: Extreme nausea, palpitations, ringing sound in my ears and then no sound at all, feel hot and sweaty and then cold after it passes,etc.. On one occasion this year, I remember after the Syncope when I came around I felt I had no heart beat and then it suddenly started to come back slowly. I usually know I’m going to faint because of these symptoms but I have also fainted sometimes with no previous warning or presyncope and have people looking at me and I don’t have any re-collection of what had happened. I have always assumed I have Neuro-cardiogenic / vaso-vagal syncope , so never showed it to a doctor because I had read some years back that as you age it goes away. Obviously, in my case it hasn’t.  I have also noticed during the last 2-3 episodes that I DON’T  get tunnel -vision/vision changes/black-out etc but instead just end up closing my eyes involuntarily. But I always feel the ringing in my ears though which keeps increasing and gets extremely loud and then no hearing at all, nausea and feel very hot. I get palpitations sometimes and sometimes I don’t.
I’ve also had 2 episodes of very severe palpitations which lasted for 15-20 min just after I had started mild exercise ( Felt as if my heart was in my throat). In one I was walking lightly on the treadmill and the other I had just started swimming.  I have never taken this very seriously until recently because I’ve been diagnosed with Fibromyalgia for pain in my back and arms.  So, I started swimming as recommended by my Rheumatologist but now I’m scared to get into the pool.
On a daily basis, I feel extremely fatigued, dizzy, dis-oriented, sometimes short of breath after even slight activity. Somedays I feel drugged and my eye-lids feel very heavy and I have trouble just staying awake. I have also noticed that I get very dizzy when I try to stand up from a low sitting position (see stars etc). I also have chest-pain sometimes (  have always assumed that it’s Gas/Fibromyalgia). I also get mild-moderate palpitations and slight ringing in my ears daily. I used to have 3-4 cups of coffee everyday but for the past 6 months have reduced it to 1-2 cups/day (I still have it because otherwise I have no energy at all ). I also use salt liberally ( to help with low BP) and drink water like a fish as I’m thirsty all the time! I have been recording my vitals recently. I have a  low normal BP of 90-100/60-70, Heart rate while sitting is in 70-90s, sometimes in 100s and on standing is from upper 90s to sometimes in 120s. I have also seen HR from 130-140 and sometimes in 150s on standing especially when I feel moderate palpitations ( I actually got a little concerned when I saw this, is this normal?).  The last 2 times when I had the presyncope/syncope/palpitations, I was able to take a couple of readings before/15-20 after the start of pre-syncope with my Withings BP monitor and HR app ( the BP monitor kept failing to inflate during and 15-20 min after the episode….maybe because the BP readings were too low?)  and I just gave up after a while because I felt too sick. The readings I got were :
1st episode : STANDING BP( before start of pre-syncope/syncope) -  90-100 / 71-82, HR 124-130.
2nd episode :  HR ( during moderate palpitations)- 157, then 130, 134, 137
SITTING BP ( 15 min after feeling palpitations) -  85-91 / 53-58, HR- 107,
I  went to see a Cardiologist 2 months back and he also said that I might have NCS but then I had a NEGATIVE tilt-table test result . I also had a normal Echo, EKG and Stress tests. So, now he has referred me to an EP Cardiologist and wants me to get an implantable loo recorder. I wanted to know what you guys thought and if I have Dysautonomia or if this is Cardiac-related or  NCS ? I was quite sure I will fail the TTT but I didn’t, so I’m worried now. I am desperate to find out what’s wrong with me because I feel I cannot keep living like this. Any inputs/suggestions are highly appreciated. Thank you!
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875426_tn?1325532016
Hope he's thorough on Friday!
18 Comments Post a Comment
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875426_tn?1325532016
I'm pretty sure Heiferly, who has been a moderator for quite some time on this board, has had an implanted loop recorder before.  You might want to send her a private message and see if she has some input for you.  

I have a sibling suffering from some of the same symptoms you describe, the ringing ears that get louder, getting hot, fibromyalgia, dizzy, feeling like fainting.  It was kind of uncanny reading your description.  Still trying to discover the trouble in my sibling's case.  Has a 30 day monitor on now for heart & tilt table scheduled, etc..  

Have you considered travelling to a dysautonomia clinic?  
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Avatar_f_tn
Hi! Thanks for responding. I thought I was the only one :) Please keep me posted about his/her results especially the tilt table. I was so sure I was going to fail it but I didn't...my BP went down only around 10 mm I think, not sure want happened to the heart rate. I have a good Rheumatologist and he said that Syncope/presyncope and Fibromyalgia are not really connected. He was extremely concerned when I told him about these episodes ... he said " that's a lot " and asked me to follow this up with a Cardiologist and Neurologist. Also, asked me to monitor my low BP. Does your sibling have a low normal BP too?
Will send a messsage to Heiferly as I'm seriously thinking of getting one implanted to rule out any cardiac issues.
I tried making an appointment at Cleveland Clinic but they don't have an opening till January, I made the appointment but I'm very concerned and would have very much liked an earlier appointment. Also tried Dr. Grubb..no appointment available for one year.
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875426_tn?1325532016
My sibling's being referred to a neurologist too!  Yes, my sibling has low normal blood pressure!  It is difficult to get appointments at these places, they are so busy.  Did you also try Vanderbilt in TN?  
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Avatar_f_tn
Wow! Low normal BP too...That is interesting! I didn't try Venaderbilt as it's too far for me. Cleveland Clinic is the closest that I can find. I also just made an appointment with a local Neurologist but It's not until late October. Please keep me posted on your sibling and I will do the same :) Hopefully we get some answers soon! I have already passed out 3 times this week which has never happened before.
Also, I was reading that a lot of people with Fibromyalgia have Dysautonomia too and their symptoms of Fibro improve a lot if the Dysautonomia can be treated/controlled.
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875426_tn?1325532016
Wow, I didn't know that about fibro and dysautonomia often being coupled!  I do know that P.O.T.S. is said to be hereditary and I have that, along with a cousin of mine though!  I hope you were able to get on cancellation lists with both Cleveland Clinic and the neurologist in case something sooner comes up?  Do please let me know what you find out- I'd be interested!  I usually clean out my watch list some, so if it's been longer than a week since we said anything to each other on here, please send me a private message?  I'd really like to hear from you!
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Avatar_f_tn
Yes, they seem to be connected! I have been sick with viral/cold for a week, so have been doing a lot of reading on this. They don't have a cancellation list at Cleveland Clinic but the Neurologist has one. So, hoping to get in sooner with him..he deals with Dysautomia patients but honestly I don't know how good he is. Yeah, let's keep in touch! I will send you a PM if there are any developments :) I do have an appointment with an EP Cardiologist this Friday. He has experience with NCS and POTS too. Let's see what he says...
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875426_tn?1325532016
Hope he's thorough on Friday!
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Avatar_f_tn
Just sent you a couple of links via PM ....connecting Fibromyalgia, Dysautonomia, low BP/dizziness/Fainting.( Didn't know if it's allowed to post them here). A lot of people have these together.
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875426_tn?1325532016
Got them- thanks.  Non-medhelp links they don't want posted on here on the public forum without permission from medhelp, I believe.
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875426_tn?1325532016
Have you gotten an echocardiogram done?  My sibling did through a family practice doctor and we just got a call where they scheduled an appt. tomorrow with a cardiologist.  We haven't gotten results from the PCP for the echocardiogram and it's been a while, so wondering if it has to do with results.
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Avatar_f_tn
I did get an Echo done and it is ok except for trace mitral regurgitation, mild tricuspid regurgitation and hypermobile interartrial septum which I am told is normal.
I'm also monitoring my BP/HR daily as my Rheumatolgist asked me to do so. Doing it with a Withings BP monitor that records everything on my iphone so that I can show it to the doctors. So far I'm very happy with it. Maybe your sibling can do the same. I've also started keeping a journal of my symptoms/readings etc. You can read my 2 posts in the "Heart Rhythm" forum ( Great advice by some forum members there)
I have also noticed that I always faint when my diastolic BP goes below 50mm(in one instance systolic was 69 mm also)  and I have tachycardia most of the time (150-200) which starts going down as the Presyncope becomes Syncope I guess.
I am also taking my BP lying down and then for 10 min standing up first thing in the morning. What I have noticed it that my BP is very inconsistent..sometimes the Systolic - goes down by 20 mm/ up by 10 mm/ stays the same, Diastolic always goes up by 5-15 mm and my Heart Rate almost always goes up  by 30 bpm  but sometimes it's been up only 20 mm also.
I don't know what to make of it?!
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875426_tn?1325532016
Sounds like if there's one thing you can count on with the systolic- is it's unpredictable!  We don't have i-phones here, but do have an Omron blood pressure monitor at home.
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Avatar_f_tn
Haha..true! Omron is great too from what I have heard from friends :)
Hope all goes well for your sibling tomorrow with the Cardiologist and he can give you some answers.
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875426_tn?1325532016
Cardiologist says sibling's heart tests thus far fine.  Still doing 30 day monitor and GP has her scheduled for tilt test.
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Avatar_f_tn
That's great to know! Thanks :) So glad everything went well for your sibling today!!!
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875426_tn?1325532016
:)  I plan to look for your report after Friday's appointment.  All this fainting must be very disconcerting to you.  Did you buy a helmet?  One of our moderators, Halbashes, did because of a concussion I believe.
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Avatar_f_tn
Helmet? haha..no I didn't but maybe I should. My friends are asking me not to drive as they are concerned about this happening while driving....though I have never come close to this happening while driving before.
I am noticing though that when I get moderate palpitations/chest pain, my HR(standing) is usually 130-140. Yesterday my heart rate standing was 153, 172 and then 135,144,137 and so on. I usually have this after coffee/eating.
My heart rate just before fainting last two times was 130-140
Maybe it's IST ( Inappropriate Sinus Tachycardia)? I read that lot of people faint from IST...
Another thing I'm going to ask the Cardiologist tomorrow is about Neurally Mediated Hypotension because it usually goes along with Fibromyalgia. During TTT, it causes one to faint after injecting nitroglycerin or isopro-terenol and I was never given this during my TTT. If he agrees and my Insurnace will cover another TTT, I would like to have another and hopefully faint this time :)
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875426_tn?1325532016
I'd get a helmet if I were a fainter with my P.O.T.S. and I.S.T.!  I hadn't heard about fainting with I.S.T.- please PM any reliable source on that?

  If you only faint with standing because of the standing position, hopefully your doctor will think it's okay for you to keep driving, so long as it isn't one of those lawn mowers you stand on as you ride or something! :0)  

Of course, if it makes people nervous to ride with you even though it turns out there isn't any additional risk for them (re: fainting), they can always choose not to ride with you or mayber offer to drive?

I was given nitroglycerin under the tongue (not injected) and passed out- the only time, thankfully, I've ever done so!  The electrophysiologist's feelings about that were: "Inducible vasodepressor syncope with nitroglycerin.  However, the underlying problem is orthostatic tachycardia syndrome."

You'd  think with all the fainting you've been having the insurance would spring for another TTT!
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Heiferly
Columbus, OH