Think I have dysautonomia

[nputte]

Hi there, I'm new here, stumbled upon the website and wanted to share my story. Two years ago I started with lightheadedness, near syncope, felt like I couldn't breathe, tachycardia. Went to the hospital, told I was fine, sent home. It went away until a few months ago. Now I have always thought that this was anxiety and have been to dr. after dr. and tried so many different psych meds for the anxiety and nothing has helped. I recently saw a cardiologist and he's not sure if I have NCS, POTS or inappropriate sinus tachycardia. I never faint, only feel lightheaded, I have severe shortness of breath at times (feel like I can't take a deep breath, especially when I eat), I get a lot of tremors at odd times and I'm orthostatic. My blood pressure hangs out in the 90's, will drop into the 80's when I stand. I'm on Lopressor and it helps with my heart rate, but nothing else really. I guess I feel like I'm going crazy. Cardiologist put me on a HIGH HIGH salt diet, I must increase my fluid intake and he gave me compression stockings to wear everyday. I'm going back in a week and a half and at that time if I'm not feeling better he wants to do a tilt table. Has anyone had this done? I"m so scared (I shouldn't be because I'm a nurse). Just wondering if maybe someone of you have tried these measures and they were enough to help your symptoms. The next step is Florinef I think. I've been thinking about seeing a specialist but don't know if I need a referral. I've gone part time at work and I just feel like I'm losing my life.

[AireScottie]

Yeah, they say it's rare, but there are at least three of us on this forum.  I've done it twice with no nitro, and dropped to 0 bmp.  I'm thinking not so rare...However, for someone who doesn't faint, I don't think that's a risk.

[Mom2four85]

I have to be the different one dont I? lol the HUTT was horrible for me.  I faint quite often and have dizziness/lightheaded most of the time, since I was about 9 years old.  

At the beginning, my stats were BP 126/79 HR 77; at 20 min it went to BP 129/87 HR 101, so they gave me 1 squirt of Nitro which raised my BP 137/71 HR 109.  By minute #4, I had a syncopal event with no palpable pulse and HR dropped precipitously to 20 bpm & crashed, but had no clue I even fainted.

I woke up to the dr holding my knees up and asking if I was ok - my BP 97/48 HR 78 wouldn't go above this, so they just took me back to my room and told the nurses.  I've been told it's rare for a patient to have no bp and no pulse during this test like I had.

I would definitely ask for a tilt test though for a possible diagnosis; my EP ordered mine.

[LivingInHope]

You can ask them to skip the part where they give you the medicine and tilt the table again if you want (that's when I fainted with the nitroglycerine).   People with POTS who don't have NCS rarely faint in regular time and I don't know about tilt tests, but I didn't faint until they basically induced it with the nitro.

  It doesn't take very long.  Though it isn't a very pleasant test, they put me down immediately when I stopped responding to their frequent questions about if I was okay or not.  It was a little bit more difficult I think with me, because my eyes were wide open, the nurse said, but I had stopped responding.  When I fainted, I started seeing kind of a swirling grayness and was dreaming.  When I awoke, the doctor said hi and I asked who he was but with the surgical hats the nurses were wearing, I quickly remembered where I was.

I hope they tested your blood iron level, which when low can aggravate tachycardia.  It doesn't take the iron getting so low that your CBC is outside normal range to aggravate the tachycardia when you already have a problem (personal experience in the past).

[Heiferly]

Well, if you never faint, you can pretty much rule out NCS, which stands for neurocardiogenic syncope.  Syncope is the medical term for fainting.  Distinguishing between POTS and IST can be tricky, but can usually be done based upon a TTT and the case history *if* the doctor reading the test and evaluating the case is experienced in winnowing out the nuances of these disorders.  That's a big if, quite frankly, but keeping records at home can REALLY help make the distinction more clear.  If you don't already have a blood pressure cuff at home for self-monitoring, now might be a good time to invest in one.  Most (all?) of us track at home either daily or from time to time as the need arises and keep this information to assist our docs in making diagnostic and treatment decisions.  I'm guessing that, as a nurse, you probably know how to take an orthostatic sequence of BPs but if you need a refresher on the proper technique let me know.  (I do run into nurses from time to time that I have to gently tell that they're taking mine wrong when my doc asks them to do it, so I guess it's something done infrequently enough that it's easy to forget.)

TTT protocols vary widely from hospital to hospital so some may administer an adrenaline-like hormone and others do not (regardless of how you are responding to the test).  Some only consider a test "positive" if the patient actually faints, while others ask the patient to warn them if a faint is imminent and do their best to spare patients that discomfort and lower the table before a faint if possible.  Because of the ambiguity in interpretation, unless you're getting the tilt done at an actual autonomic clinic (Vanderbilt, Mayo, Cleveland, etc.), I would highly recommend getting an actual hard copy of the results yourself.  That is frequently much more useful than whatever verbal interpretation you will get from the cardiologist.  (The exception for the autonomic clinics is because they already do generate reports including actual numerical values/percentages based on the testing, rather than giving vague test results such as "passed" or "failed" TTT.)  

I think at this point you may benefit from reading more about dysautonomia and POTS.  We have several good introductory articles here that talk about diagnosis and treatment options:

http://www.medhelp.org/health_pages/Neurological-Disorders/Further-Reading-on-Dysautonomia/show/696?cid=196

Please feel free to ask us whatever questions you may have.  And if you feel like poking around our Health Pages a bit more, some of these may be of interest (some are works in progress, so pardon our dust):

http://www.medhelp.org/health_pages/Neurological-Disorders/Autonomic-Dysfunction-FAQ/show/181?cid=196

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Treatments/show/171?cid=196

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196

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

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia--Salt-Loading--List-of-Salty-Foods/show/989?cid=196

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia--POTS-Diagnostic-Criteria/show/1011?cid=196

[CHRISTYDRAKE]

My son had the TTT done 2 weeks ago.  It wasn't that bad, but he never faints, only gets really dizzy and lightheaded.  He takes Fludrocortisone for his dizziness and it works really well for him.  He just has several other symptoms(abdominal pain, nausea, hot spells,insomnia) that we haven't been able to control yet.

[acesew]

Welcome.  Most of us have had many of these tests done.  The TTT is nothing to be scared of.  I have had 2 already and will probably have more.  With it you lay on a table and the nurse will make it start tilting up, taking BP and Hr at certain times until you are standing.  With me, I was negative, so then they gave me a shot of "adrenalin" and did it again.  I felt really bad with the shot, but that was about it.  If you faint with the first go around they don't do the shot.

As far as the meds, I am not much help there.  I am waiting to go to Vanderbilt to have the autonomic testing done and will then be started on some of this I imagine.  I have had trouble for 7-8 years with this.  No one knew what was going on.  Finally, I went to a diagnostic clininc and the neurologist I saw just happened to have a wife with dyso.  So that is how my adventure has started.

On the referral, it depends alot on your insurance.  For me, I can get into cardiologist, neurologist, etc without a referral, but to go to Vandy I have to have one.  I would check with them first just to make sure.

I understand how you are feeling right now.  I am going through the same thing.  I have just cut down to 10-12 hours a week for a little while.  I actually told them I wanted to quit, but I know if I don't do something, I will sit at home and go crazy.  They agreed to let me work a couple of hours a couple of days a week.

There are days that I don't know how I am going to make it.  I always seem to pull through.  It is hard.  No one at home really knows what I am going through and it is hard to describe.  I have been lucky to find this forum.  They have answered many questions and have shown a lot of support.  I hope all of us can be of help to you also.

Ace