Do I have Dysautonomia?

[Rhivs]

Hi!  I have been experiencing what almost everybody is experiencing...  Had bouts of fainting spells (or should I say faintedness...I just collapsed/fell down due to extreme weakness but I am not really that unconscious), almost everyday (sometimes especially when I am climbing the stairs or in place where there's not much air), had chronic fatigue syndrome (where even raising my arm needed a lot of energy, even opening my eyes or saying a word was energy draining for me), can't stand walking around  the mall, a supermarket or even a bookstore (i  feel dizzy in 30 mins or so, with accompanying nausea eventually), i was diagnosed with  irritable bowel syndrome (often have gas, bloated feeling; sometimes have diarrhea in a day then constipated the following day), also experienced excessive sweating (you can literally squeeze my clothes and underwear and water will pour out),  have been experiencing blurred vision, foggy brain (can't concentrate, poor cognition, slurred speech, can't find the right words to say), have numb feeling in one side of my body, have cold hands and feet, often times have rapid and pounding heartbeats (then will have red spots on my skin (chest and arms specifically, one time i had a very fast and strong heartbeat that I couldn't even count it and felt that my heart was about to explode!.. I just prayed... then everything was fine after a few minutes),  had extreme pain that will just go away, and now , have elevated (or should i say HIGH) blood pressure since it has reached 190/125 already, but it's not consistent sometimes my BP is high and after a few minutes or few hours it's normal again... But I started taking maintenance meds since it's reaching 190 already.   And there are lots more... These were the things that I have experienced and have been experiencing for the past 4-5 years.  

Sadly, just like everybody else, I've also been to many doctors of all kind, and still with no definite diagnosis...  Been through a lot of lab tests with normal results...    And ended up being prescribed with meds for anxiety and panic attacks... And worst, being always referred to a psychiatrist. :-(

Had to do my own research to help myself since I've been staying in bed for almost a year due to dizziness/faintedness and extreme fatigue.  I stopped seeing the doctors (haven't found someone who's sympathetic enough to diagnose what's really wrong with me) and have gone really tired of doing different lab work ups.  

Symptoms will just come and go, they vary in severity, sometimes they last long and sometimes they are just there in minutes.   It's crazy! Maybe that's why some doctors were telling me to see a psychiatrist, because the symptoms were not consistent... :-(

At present, I haven't been feeling dizzy that much, I rarely have fainting spells since I'm having a high blood pressure for the past 4 months.

I started having symptoms when I was taking my masteral degree in 2007.  I was doing my research paper then (preliminary thesis).  I haven't been having enough rest and sleep, until I had a viral infection/FLU that lasted for almost 3 months (on and off fever), I had low hemoglobin since I haven't been getting enough sleep so the doctor said that my body wasn't able to fight the infection and antibiotics couldn't help since it's a viral infection. She said that the simple FLU became a systemic viral infection.  Took meds and vitamins to increase body resistance,   I became well eventually, I had overcome the FLU, but I didn't regain my strength... and worst different symtoms came out... And so I had to stop attending my classes, I stopped studying,  since I  started fainting almost everyday and  extreme fatigue started setting in...

At present, my cardiologist suggested that I do the tilt table test, but I'm not sure if  it is still necessary since I'm no longer having bouts of faintedness and my BPis elevated. Or do I really have to do it?

Do my symptoms say that I have Dysautonomia?  Can you suggest a test aside from the tilt table test?  

Thanks a lot!

[oldtrout466]

Hi - I think the unpredictability is one of the things that seems to be hard to adjust to and also learning what may trigger off a reaction -without ending up avoiding life! My attempt at going back to work 2 weeks ago which went pear-shaped due to the erratic blood pressure is a good example. I am fairly sure it was the massage having done some searching for research - there is evidence from a couple of studies that trigger point or other painful massage raises BP whereas gentle relaxing massage lowers it! The BP has gone down now - and the constant dizziness and fatigue has come back!! It feels as if the 'control dial' makes too large adjustments and causes rebound effects instead of the constant subtle adjustments. I wonder if keeping it as stable as possible helps it 'repair' in some way ?? People do seem to report spells of being ok then flares. I think developing awareness of what and how you do things seems to help -eg simply not moving around too quickly or bending over suddenly. i find even sitting at the computer concentrating too hard can upset the balance too. I've got tickets for a rock festival in a month!!! - that should be a challenge to keep calm and quiet!!

[Rhivs]

Thanks a lot!  Glad you have a doctor who understands.

Thank you for sharing all these information.

I'll take note of diazepam.

If it's really dysautonomia, then we're bound to unpredictable patterns of the malfunctioning autonumous nervous system.  It may disrupt whatever we're doing and even hamper living a normal life... but we can surely overcome it  for as log as we won't be on the losing side having ourselves eaten by the adversity of our condition. It helps to know that we are not alone and everybody is eager to help and encourage. :-)

Thanks again.  Til then...

[oldtrout466]

I'm in the UK so should get access to some decent medical help! Saw my GP this morning who agreed that it all sounded like a dyautonomia -and acknowledged that it is a very specialist field!. Signed me off work for another 2 weeks -just as I was ready to go back after being off since surgery in Jan (incidentally -the surgery also set off the same Sx for about 3 weeks but we thought it was because i had infection in the wound- now it seems to all be fitting into a pattern of anything that throws the body's equilibrium -stress, virus, surgery, excitment, and as you said, even talking) My GP is going to try to speak to the cardiologist to see who i should be referred to. Let you know.
By the way - one of the things I did find helped before - and again last night..When the BP goes up and the heart rate won't settle -despite lying quietly in bed - I take 2mg of Diazepam. My GP encourages this as i am not using it for the cognitive anxiety but to switch off the over active autonomic response -which a Beta blocker won't do in the sam way as it only really slows the heart, perhaps drops the BP but won't touch all the other autonomic features - like the adrenalin, the Raynards I get alongside it in my legs (look like a purple giraffe sometimes!)
I work in mental health and it took me a long time to accept that Diazepam was ok as i so strongly associated it with 'anxiety' and 'not coping' but I definately thinks it helps to switch off the reaction  and gives it a chance to settle back to normal!

[Rhivs]

Thanks, oldtrout466!  We pretty have much the same situation.  I was also working on my post grad research paper/thesis (you're right! it is really stressful!) when I had a viral infection that lasted for months... And that's when all my symptoms begun...

I'll really appreciate hearing from you for an update on your doctor's findings...  I guess I have to rely from other people's diagnosis and help from their doctors while I haven't found the right doctor for me. Thanks a lot!

By the way, from what country are you?

[oldtrout466]

Hi It must be hard struggling on with the lack of medical support. I am having symptoms i am wondering are a dysautonomia - my EP cardiologist had wondered about POTS but it seemed my problems were related to some other heart problems so we didn't pursue it.
However I have gone from 2/12 of low BP -thankfully never fainted- to a sudden rise in BP last week following a massage. Now it is all over the place - soaring for no reason, dropping again. I originally felt like this Feb 11 when  I was coming to the end of a very stress full post-grad course, got a 'virus' and just went to bed for about 2 months as I had absolutely no energy, was hot, chest pain, red face (which i now suspect was high BP).
I'm on other heart medication anyway for ectopic beats - which get worse when my BP is erratic. Will let you know if i find anything out which may be useful to you.

[Rhivs]

Thanks a lot!

I always tell the doctors that I might have dysautonomia, problem is, I think it is not yet recognized here in our country, the Philippines.  Some are familiar with it but still having second thoughts if it's real... :-(  

There's only one or two  hospital here in our country that's doing the tilt table test.  Most of the doctors that I've been to weren't really concerned about what's going on with me, they just want to alleviate the symptoms that I am experiencing, and rule out all the possibilities.  But still, they don't really listen to me... They often think that it's just psychological or that it's all in my mind.  

At least now I know that I am not alone... and that there people like me.

I was just crying the other day telling my husband that I cannot live like this for the rest of my life.  But I know that this is something that I have to deal with positively despite the odds and the craziness of our symptoms.
With our condition, we have to rely on God's grace each day... And that's enough to make us smile. :-)

Thanks again, may God bless you and keep you safe all the days of your life. :-)

[DNP47]

It defintely sounds to me like you do have dysautonomia, of course this is my non-MD opinion of course. You seem to be very symptomatic and thats what you need to stress to your doctors. I cant stand when doctors listen to our concerns but dont actually hear us. It sounds like they are finally trying to determine the cause of the irregularities.

Dont feel like your crazy, I know some of us feel that way on our journey to diagnosis and treatment. Your symptoms are not normal, and are affecting your daily life. It sounds like they are doing as many tests as they can think of to narrow down the cause of the problem.

We are pretty similar, I am a mother of 2, 5'2 and 110-115 lbs. I had no prior history of heart problems when I was younger. Our symptoms are different because I dont have the high blood pressure like you, but I do have the rapid heart rate, the mental fog, confusion at times and I have passed out a few times. My heart rate is irratic, and has a mind of its own. I have found that for me drinking lots of fluid and increasing my salt intake has helped. However, I am not sure if your doctor would recommend any of those due to your issue with high blood pressure.

I wish you the best, and I think its a good thing to know that you are not alone in this battle.

[Rhivs]

Thanks for replying to my post. :-)

I've had an ekg, worn holter monitor, had a threadmill stress test,  blood chem, ana tests, thyroid tests, and etc, All normal as far as i remember. These were done 3 yrs ago.

I didn't have a renal panel and catecholamines test.

Since I'm having high bp at present, I was asked to have a threadmill stress test, ekg, 2d echo doppler, holter monitor, a tilt table test and the test for adrenal functions (renin and aldesterone test with standing/walking upright for 4 hrs).Will do it this  week.

I  am 38 yrs old, a mother of 2, I weigh 125 pounds with a height of 5'4". I don't smoke.

At present I usually have a rapid heartbeat, not the whole day though, but usually when i climb the stairs, when I talk for long (15mins  and up straight ), when I change position in bed when lying,  or sometimes even while sleeping (i'll just be awaken in the middle of my sleep due to the strong and very fast heartbeat).  I tried getting my bp while lying for example it's 150/90. then I'll stand up and take my bp again and it turned 112/72.  I don't know if  it means something.  Is this change in my bp relevant?

[DNP47]

Have you worn a holter monitor? Had an EKG, echo or any of these types of tests?

Do you smoke? Are you overweight? Are you under 20? 20-50? 50+ years old?

The tilt table test is not something that you should be scared or worried about. They lay you flat on the table and place heart monitors on you, and then they gradually lift the table until you are in a standing position.

This test is good at identifing issues related to the autonomic nervous system. It can tell you if your blood pressure/heart rate change abnormally related to position.

Have they checked your urine for catecholamines? (norepinephrine levels ect) Typically with this test they collect your urine for 24 hours.

Have they drawn a renal panel? This would include electrolyes ect.

All the tests mentioned are tools to guide the MD in the right direction, and hopefully find whatever it is thats causing your symptoms.