I'm not feeling well and I don't know what to do.

Wow. I didn’t expect to get so many replies. I so appreciate all of the support and advice offered

.

I woke up this morning feeling rather miserable. I had chest pain and a headache along with shakiness and a faint feeling. And, so I called my doctor’s office once again. Thankfully, my favorite nurse was there and she took it upon herself to page my doctor (she is out of the office) and request that she call me back as soon as possible. And, I just got off the phone with my doctor in the last 10 minutes.

My doctor is concerned. She feels that while I’ve had episodes of fainting in the past, this is abnormal for me. In fact, I had to tell my doctor that I fainted while sitting on the sofa this morning. I had been sitting for approximately 45 minutes when I passed out. All I remember is coming to and being a little confused as to why I was laying down. The fainting was preceded by some dizziness, but nothing more. And, it scared me. After hearing about that, my doctor was able to finagle an appointment for me for tomorrow morning with one of her associates. But, if I experience anything similar again before tomorrow or if I feel worse, I am to get to the ER immediately. While this can be as simple as orthostatic hypotension or low blood sugar, the fear is that this could be as severe as a cardiac issue or stroke. I’d be lying if I said that I wasn’t afraid, but I am grateful that I at least got to speak with my doctor.

So, for now, I am trying to prevent another fainting spell. I ate both breakfast and lunch (I haven’t been eating well over the last couple of weeks due to the headaches and nausea) and have really made an effort to push fluids. I’ve been drinking either Propel or Gatorade all day and am trying to just keep quiet. But, I am still feeling nauseous and shaky. I’m hoping that I can make it through to tomorrow morning without having another “episode” but I don’t know how realistic that is. I’ve accepted (and committed) that I will go directly to the emergency room if I start to feel worse or if I faint again. And, since my roommate is not home, I am willing to call 911 if necessary. I am just praying it doesn’t come to that.

Someone asked me whether I have an eating disorder. And, the truth is that I do. However, I have been in recovery for some time now (4 years yesterday, in fact

). I still struggle from time to time and have periods where I restrict my intake or use other behaviors, but I know that health-wise, my eating disorder is not the primary cause for what I’m going through now. My resting heart rate tends to be high rather than low and I have very distinct symptoms when dealing with consequences from my eating disorder. My doctor, however, is very much aware of my history (she has been with me through it all -- from my sickest to my healthiest) and also doesn’t feel this is a byproduct of the eating disorder. But, it is a good point and will certainly be something I mention if I have to go to the hospital.

I just appreciate all of your support and kindness

. As long as I am not hospitalized, I will continue to update everyone on my condition. I hope this is just a blip in the road and that, if anything, a simple medication can fix the issue. But, regardless of the outcome, I know now that everything will be okay. I think I needed the reassurance from my doctor and the kindness that everyone here has offered. If nothing else, it has helped me deal with this situation with more grace and compassion toward myself…

I'm glad you are going to see someone tomorrow. Your symptoms sound very scary. Nothing to ignore. I hope they find the cause and get you on the road to wellness. good luck hon.

I pray that the doctor finds out what is wrong and soon. I don't know how old you are but the first thing I thought of was mini or mild stroke. The confusion was what concerned me. I know from experience, that confusion is a warning for an impending stroke. Let us know what your doctor finds out.

I do hope they find out whats wrong, its sounds rather scary

Please keep us posted. Are you able to take care of your cats okay?

Thank you all for your continued kindness. I apologize if this is jumbled, but I was just discharged from the hospital and only got home about 1/2 an hour ago.

I am back from a long day and night in the hospital. I called 911 yesterday afternoon shortly after I last posted. I had been walking from the living room to the kitchen to get some water when my vision changed and everything grew dark. I woke up on the floor with a knot at the back of my head some time later and knew I had no choice but to immediately go to the emergency room.

From the moment the EMS took me out to the ambulance, I knew that they were not going to believe me. And, I was right. Since my vital signs were, for the most part, stable, they questioned why I did not just go in to see my doctor. They informed me that there was a walk-in clinic about 15 minutes away and that that would've been a better option than calling 911. Needless to say, I felt completely ashamed of myself. And, while I wish things could have improved after that, they did not. I requested to go to the Cleveland Clinic, but wound up at one of the other hospitals instead. The nurse, while very kind, told me from the beginning that she thought I was having an anxiety attack. My heart was beating rapidly (about 120-130 bpm) and my pulse-ox was a bit low, but I've had my share of anxiety attacks in the past and know that my symptoms were not the result of anxiety or panic. To make matters worse, they couldn't get a vein for an IV and stuck me 7 times before finding someone else who was more experienced (who, by the way, got me on the first try). And, despite both the doctor and nurse's suspicions that I was just anxious, they insisted on catheterizing me for a urine sample. Which, by the way, for someone who has interstitial cystitis is an extremely painful and potentially dangerous move. But, they were not willing to listen to anything that I had to say -- apparently, they knew more about my body than I did. Yes, I'm a bit bitter...

In the end, the hospital did do a CT scan and a chest x-ray. Both came back normal. My bloodwork did as well. They insisted I was dehydrated and that was what was causing me to have a rapid heart rate. And, so they gave me fluids and then sent me home without a second thought. I questioned what I was to do if I were to continue to pass out and they told me, verbatim, "go to your doctor and get some anti-anxiety meds." I was furious and, as I walked out the door, almost passed out and hit the floor. Thankfully, a nurse from one of the other departments kind of caught my arm and helped me out to the car where my roommate was waiting for me.

As soon as I was in the car, I called my doctor's office who said, in no uncertain terms, to not pass go, do not collect $200.00, just head straight to the Cleveland Clinic's emergency room. And, so my roommate drove me there. They were packed! But, I quickly found out that fainting in the emergency room's waiting room takes you to the top of the list. And, I was taken back in a matter of minutes. They ran the same tests, but also did an EKG (which showed tachycardia) and an echocardiogram (which showed a slight pericardial effusion). But, neither of those things were the direct cause of my symptoms and so they continued to run tests including a chest CT scan, a tilt-table test, and additional bloodwork. They also gave me medication to help control my headache and nausea. However, since they still had no answers, they wanted to admit me. But, they decided against it in the end as my doctor was more than willing to run the necessary tests as an outpatient. And, since the tests proved that my condition wasn't life-threatening, along with the fact that I wanted to go home, they felt that discharging me was a safe bet.

So, if you've read all this, you're probably wondering what the diagnosis was. They are almost 100% certain that I have a severe case of neurocardiogenic syncope. This is the same syndrome that causes people to pass out at the sight of blood, but, in someone like me, it causes more severe and long-lasting symptoms. You can read about the condition here: http://www.hrtcare.com/neurosyn.asp. The game plan, with my doctor, is to get me wearing a holter monitor to ensure the tachycardia isn't something to be overly concerned with and to have another tilt-table test. I'll also need repeat EKG's, bloodwork, and another echocardiogram. They also suggested I see a neurologist as there is some concern as to whether I also suffer from a seizure disorder. But, for now, I'm on a number of medications to help control my symptoms and I am armed with facts both on how to avoid my triggers and how to lessen my symptoms. It's a lot to think about and I am upset that there's no cut and dry answer, but I am grateful to know that there is a reason as to why I've been feeling so terrible and that there is hope going forward.

It is going to be a long road as I am still in a lot of pain and there is danger of me becoming medically unstable, but there is an action plan in place and I have people in my life willing to support me and assist me with what I need to do in order to take care of myself and my pets. Thank goodness I went to the Cleveland Clinic, though, as had I gone home, my situation could have become life-threatening.

There isn't much more for me to say at this point, but I want to thank you all and ask for continued prayers, vibes, or well wishes. I appreciate all of your kindness and support -- it has certainly helped me get through this difficult time .

Thank goodness you got a second opinion and have finally got an answer, I was like that before I ahd a thyroid diagnosis, its like you have the symptoms but nobody believes you. that you finally get some help now and make sure you rest. Please keep us all updated.xx

I've been reading the thread, and thinking about you and hoping you'll be well. I'm glad you finally got some decent care and a diagnosis and started some kind of treatment. Sending more vibes your way!!

NCS huh? I mentioned it by another name earlier - neurally mediated hypotension. Welcome to the club. On here both I and Starryeyedtiger have it. It's not that uncommon in younger women (typically hits you around your teens or twenties) that have other health issues or a family history of it.
Your past history of a eating disorder plus all of your recent health issues likely triggered it. Some people's nervous systems can heal and they'll get better, some are stuck with it for life.

NCS is a form of dysautonomia, you may learn a lot from reading this site and checking out their forum, too. You may also want to go on youtube and look up "the woman who kept falling down" if you want to watch Linda Smith's story that was aired on an episode of Mystery Diagnosis.

This makes you the fifth person I've guessed correctly for having this - 6 if I include myself. If you have any other questions, I have a ton of links and have been living with this for a while - though I'm not as bad off as some with it are.
Oh, and sinus tach is fairly normal for us. It's our bodies way of trying to correct the low blood pressure, except it doesn't work how it should. Sometimes we'll show up with other odd things on EKGs, such as inverted T waves - again, many have this.

I am glad you have finally have an answer.

That is really frustrating what you had to go through to get there, though. I would never step foot in that first place you went to. Im sorry you were treated that way.

this is awful my friend...
I hope at this hour you feel better...

... ... ... ... ...

You should never feel ashamed or embarrassed to seek medical help. The fact that the medical staff seemed to admonish you is shameful. I'm a nurse, and I think you should call their superiors and make a complaint. Every hospital has a "patient relations" department that is an advocate for the patients. Please call!

I'm glad that you went to another clinic and sought help and hopefully have a diagnosis.

I was off work for over 4 years and all of the doctors considered me a "medical mystery." Finally I got fed up and entered all of my symptoms into Google and came up with "Dysautonomia Syndrome." It's a disorder that has no cure and all you can do is treat the individual symptoms as they occur. However, all of my tests were being taken and considered individually, and no one put them together as a whole.

I know what it's like to be looked at as though you are some kook making things up.

My old family doctor was useless. He took the "wait and see" approach which just made things worse for me. So I went looking for a new family doctor in the hopes of finding someone pro-active that would do some tests and help me on the way to recovery and back to my job,

I actually had one doctor tell me straight out to my face without so much as having taken my temperature, that I'm lying, there is nothing wrong with me and there is no reason that I should be off work on disability and that my only problem was that I was fat and needed to stop stuffing my face and get off the couch and exercise! He actually said that!!

He came into the office, sat in a chair, read my nicely typed medical history that I had given him, looked at me across his desk and said that!!

While I haven't been officially diagnosed with it, I'm convinced this is what is causing my broad range of symptoms.

Here is a thread I started about it:

http://www.thecatsite.com/forums/showthread.php?t=171638

Here are some links about it:

http://brain-and-heart.freewebspace....ch_text_1.html

http://www.ninds.nih.gov/disorders/d...ia.htm#What_is

http://www.dinet.org/symptoms.htm

Lots of vibes coming your way!

Originally Posted by Natalie_ca

Finally I got fed up and entered all of my symptoms into Google and came up with "Dysautonomia Syndrome." It's a disorder that has no cure and all you can do is treat the individual symptoms as they occur.

Click to expand...

As I've said before, dysautonomia is an umbrella term for several disorders/syndromes of the autonomic nervous system. Dysautonomia is not the actual diagnosis of itself unless it's something like familial (which is fatal, you would have died from this in infancy - though now treatment can keep some alive till 30s) and when there is complete failure of the autonomic nervous system - in which case.. you don't usually live long either.
Other conditions like NCS, POTS,OI, PAF, MVP, and secondary induced issues with the autonomic nervous system from things like diabetic peripheral neuropathy, EDS, parkinsons, thyroid issues (common cause), addisons, and other addrenal issues are considered partial types of dysautonomia and are referred to (usually) by their proper names because they have varying levels of affects.

I can actually eat and am not bed ridden, for example. Others with different disorders of the ANS can't function in these areas.
Unfortunately even NCS, POTS, OI, and PAF are often vague labels as they can be caused be different underlying mechanisms failing - such as the norepinephrine transport gene messing up or problems with reduced nitric oxide activity. Others have metabolism issues, their body simply fails to break certain things down as it should - I used to know someone who's methylation cycle wasn't working properly (yet all she had was a NCS diagnosis originally - beta blockers seriously messed her up, btw, and there is med lit suggesting they aren't good to use in NCS people).