Dysautonomia (Autonomic Dysfunction) Community
Will I ever find out why?
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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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Will I ever find out why?

When I was 21 I fainted for the first time, while sitting down at my computer surfing the web. I did not feel anything coming on. They ruled out seizures at a neurologist. A few months later I fainted washing my face, standing up in the bathroom. I felt no warning. I didn't go to the ER, and my family doctor told me that since I'd just gone to the bathroom it had been caused by that. Months later I was at the gym working out and despite cooling down I suddenly felt sick and like the room was spinning before fainting again. I also vomited. It was the first time other people saw me faint, there were no convulsions, and I came to within 1-2 minutes. My doctor told me it was my blood pressure dropping suddenly after working out.

About a year after that I got up in the morning and fainted again, in my bedroom, about 20 minutes after I woke up. I didn't feel it coming on this time.  I came to a few minutes later and was late to work. An hour later I felt dizzy and lightheaded before I fainted again, at work standing up. According to my coworkers I came to while lying down, was groggy, and fainted again before coming to a minute or so later. The ER doctor told me that since I work standing up it was likely cause by my blood pressure.

5 weeks ago I woke up an hour after going to sleep at night with stomach cramps. They kept me awake in bed for a while before I got up to go pee. I managed to go to the bathroom before I fainted, but I had no warning a faint was coming and next thing I knew I was wondering why my face hurt so badly. The floor in the bathroom is concrete and linoleum, so I'd toppled over and fractured a bone above my eye, split my lip, and there was a pool of blood from my nose. I don't know how long I was out.

Since then, loop moniter, ecg, echo, and stress tests have all been normal. Only weird thing was I remained tachycardic (~115-125bpm) for over 15 minutes after the stress test, sitting. With no common trigger, will I ever find out why I faint?
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Avatar_n_tn
I just realized I posted this in the wrong forum.  Sorry!
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726204_tn?1285879778
This is a good place for your post to be x

Have you had a Tilt Table Test (TTT)?  This is the test I would recommend you ask for if all other cardiac testing have been normal.

Below is a link to one of our health pages here and another explaining what a TTT is:

http://www.medhelp.org/health_pages/Neurological-Disorders/Diagnosing-Dysautonomia/show/827?cid=196

Have you had 24hr blood pressure monitoring?  or have you had your bp and hr monitored in different positions, i.e. laying and standing?  Has your doctor any documented evidence that your bp does drop?

Sorry for all the questions :)

http://www.heartrhythmcharity.org.uk/Documents/Booklets/Tilt%20Test.pdf
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Avatar_n_tn
They mentioned something about tilt table test not being sensitive or conclusive and dismissed the idea when I was doing my stress test the other day.  They did have me lie down and jump up and checked my bp.  I've never had 24 hr bp monitoring, but my bp is generally on the low end of normal range, which I believe is why the ER doctor assuemd it was bp.
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875426_tn?1325532016
I'd recommend getting a second opinon on the value of the tilt table test from an electrophysiologist.  With your tachy while at rest- did they check your iron and ferritin (iron stores)?  Low iron, even with a normal CBC, can bring up your heart rate (it has done it to me before).
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Avatar_f_tn
The symptoms you describe can be hard for drs. who are not knowledgeable to sort out, but much easier for drs. who specialize in this.  A tilt table test could be very useful. It is important that it be done by someone who is qualified to interpret it correctly.  The best places to get a thorough evaluation are Mayo, Cleveland Clinic, and Vanderbilt.  Not sure where you live so I am mentioning all three. Since you have already had significant injuries, I would act on this soon.

Take care and keep us posted.
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Avatar_f_tn
Be sure to ask your doctors to do thorough adrenal function testing also. You may be developing adrenal insufficiency. It all sounds like poor adrenal response - the vomiting, stomach cramps, sudden fainting, low BP.

You said this started when you were 21. May I ask, how old are you now? (it may be relevant).

Please, get those adrenals examined!
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Avatar_n_tn
I'm 26 now.  It's been 5 years, and I've fainted 6 times.  I know it's not all that often, but since it usually comes on suddenly and without warning (with the exception of the latest time and when I'd been working out hard) it means it's hard to track and predict, so I want to get to the bottom of it and not have to worry about it.

As for it being a problem with my adrenal gland, I hadn't thought of that, but now that I'm looking into it, I don't think it is.  the vomiting was due to a concussion, and I actually think the cramping was due to indigestion, and since they occurred in two different episodes years apart, I don't think the two are connected.  Also, my doctor did a full blood work up and wouldn't that include hormone levels?  I'll ask when I see her next, though.
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Avatar_n_tn
I don't live near any of those places- I'm in Canada, so luckily I'm seeing 2 specialists and a family doctor free of any charge, and the specialists are at top research hospitals in Toronto, so hopefully I'm getting good care.  

I will definitely ask about the tilt table test again, but I think I may have had one when I first saw my neurologist 5 years ago.. I don't remember all that well, but I'll ask him when I see him in a couple weeks.
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Avatar_n_tn
Update: I still don't know the cause of the fainting, but I'm waiting to see an electrophysiologist now.  Due to my family history of wolff parkinson white syndrome and other heart related issues they do think it's an arrythmia, but they haven't been able to detect it since my episodes are so infrequent.
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875426_tn?1325532016
Re: your full blood work up- usually, it would be an endocrinologist who would order cortisol testing- is that who you saw?
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Avatar_n_tn
In Canada you don't get to see an endocrinologist without a referral from your family doctor.  My family doctor did run a barrage of urine and blood tests and everything was normal.  Due to the nature of the fainting my cardiologist believe i have an intermittent arrhythmia, so it's not vasovagal syncope.  At this point I think this post really is in the wrong forum because now they're almost sure it's heart related.  I'm having an EP study on August 20th.  The idea of having a catheter fed into my heart really freaks me out.  
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Avatar_n_tn
Also, i'm not sure exactly what a cortisol test is.  I'm not sure it would read accurately for me, though, since it might be affected by the corticosteroids I've been on for asthma since I was 8.  Talk about being unlucky in health- this *****.
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875426_tn?1325532016
Well, neurocardiogenic syncope or NCS is a form of dysautonomia, and I'm not so sure you are in the wrong forum.  P.O.T.S. or Postural orthostatic tachycardia syndrome (which for a certain percentage can involve fainting) and inappropriate sinus tachycardia (IST), which can happen regardless of position are also considered forms of dysautonomia.

I can understand the thought of a catheter being threaded into your heart freaking you out, as I had an angiogram myself and it was very stressful to me.  I still think you should be getting a tilt table test done.  I think you should get it done before this more invasive procedure you are currently contemplating.

An endocrinologist in the U.S. also requires a referral from a physician, typically primary care dr..  Cortisol is produced by the adrenal glands.  Some people develop Addison's, which involves low blood pressure and even fainting and can be caused by secondary adrenal insufficiency.  A common cause of this insufficiency is from when someone who takes corticosteroids for something chronic like asthma suddenly stops.  An Addisonian crisis can include low blood pressure and loss of consciousness.   Can you get a copy of your records to see if you got your cortisol tested?  



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Avatar_f_tn
Hi My name is Tiffany. I was diagnosed with Dysautonomia (POTS) two years ago. I am trying to find a Dr here in Toronto who specializes in this. Do you know of one. If you can pass on that info I would appreciate it.

My email is ***@****

Thank you
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875426_tn?1325532016
I believe it is tough to find dysautonomia specialists in a lot of areas and many have to travel.  You might check the links on here for dysautonomia clinics:
http://www.medhelp.org/tags/health_page/24603/Dysautonomia/Dysautonomia-Specialists?hp_id=717
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