DEBRAA99

I had cervical fusion at the c7/8 area. The surgery itself was a huge success. However, I believe the trauma of the surgery is what triggered my dysautonomia, as I was perfectly fine before. I was in constant pain in the upper back, neck and head prior to surgery, and nothing worked. I could literally feel relief while coming to after the surgery. The downfall..... I no longer have a life due to the onset of dysautonomia soon after. Not sure if this helps you or makes it worse. I guess what I would say is if you allready have dysautonomia, then maybe the surgery could alleviate some aspects of your spine issues.

Chronic agony

Mighty mouse, I actually have the word Agony with a heart an ekg rythm tatoo on my chest!!!!

When I have a bad flare, my legs hurt quite bad. They feel so heavy and sore, like I ran a marathon. I have been in the ER before, and my legs will start shaking so bad the bed rocks. The docs say its just anxiety!!!!!

Great idea! I have a MySpace account that I use sometimes. I am mostly on Facebook now and I try to get involved there too. Thanks for making the suggestion!

KC

Hey, couldn't find ya on facebook. my email address for facebook is DEBRAA99@yahoo.com

Was just curious if anyone would be willing to share myspace links? Just thought it might be a great way to help "educate" our friends and family who are on our myspace pages, if they read comments/blogs from those of us that deal with this. In other words, if they see comments on your page from someone else who has it, maybe it will help with the understanding. Just a thought.

USELESS. ALONE. MISUNDERSTOOD. MISERABLE. LET DOWN.

Sorry, one word didn't cut it!!

My thought on this..... Let's start "labeling" the doctors. Here's my list:

Incompetent

Maybe impotent and that's why the attitude

Arrogant

Biased

Money hungry

plugged ears(since they don't seem to be able to listen to a ##### thing we say

graduate of online physician program

Power kick syndrome

Care to add any that I may have missed?

It will take awhile, but in time, you'll probably become more accepting and learn to live with your illness instead of battling against it.

I don't want to single you out here, but this is where I am much different. I will NEVER accept this as my life because this is not who I am.

A few years ago the hair on the left side of my head had completely fallen out and I went to a forum to get some ideas on what to do about it. They said the same thing as you, to accept the fact that your hair is gone forever. No that wasn't an option for me and I left the group not long after that. Well I started researching and eventually I found the cause of my hair loss and it's all grown back. If I had just accepted it, then I'd probably be wearing a wig now.

Dana, I feel the same as you. I will never accept it either. The "me" is gone, replaced by a useless, couch ridden piece of flesh. Can't accept it!!!!!!

How you were treated at CC does not surprise me at all. Was treated the same way. I did the TTT there, had to stop about 5 minutes in due to chest pain. Results were read by Dr. F. She stated severe positive result. Yet Doctor J, "overruled" her and said it was the Coreg I was on. Funny, I wasn't on Coreg then. I had stopped it about 2 weeks prior. Unfortunately, I have to go back there this coming week. Most definitely will not go back to Dr. J if I can avoid it. The fact that he was promoted to director has clearly gone to his head. I have asked repeatedly for written tests results, and got nothing. You are right, many Doctors look good on paper and that is it.

Apparently, it must be in all of our heads. Wow, didn't realize there could be sooooo many people with similar symptoms who are "just depressed". I have had it with these people who don't even deserve to be addressed as Doctor. And for some reason, that can't seem to grasp the concept that there is no way a person would travel for hours on end to seek relief if there truly was not a physical issue going on. Has anyone ever thought about printing off some of the topics and answers on here and shoving them in the doctor's face? I know it's been suggested to me to be polite to the doctor, even if I disagree. Why? It only reinforces in his/her mind that they can continue to get away with their dismissive, degrading, disrespectful attitudes. God I am so sick of it too!!!!!!!

I have had great experiences at Cleveland Clinic. I see Dr. Shields.

Angela

Angela,

Can you tell me more about this Doctor? Is this a cardiologist? What have they done for you? Any info would be greatly appreciated.

I was just wondering if anyone would be willing to share their experiences with Cleveland Clinic? I saw Dr. Jaegar, and was not impressed at all. He belittled me, thought it was funny that I had been to so many doctors, and was just plain arrogant. The problem is, not sure if I have any other options at this point but to go back. Symptoms out of control. Any input would be greatly appreciated.

I know we bring this up here and there to some new people, but have you been tested for a pheochromocytoma? It can bring on headaches, dizziness, fainting, but not sure on chest pain. Have you done any 24-hour urine tests for norepinephrine and other markers?

I empathized with you on losing the "you" you used to be. Maybe that is a common thread that we all have, also, is that we all seem to have had very active lives before POTS hit.

Thanks for responding Sue. Never had any urine testing done. If I can ever get back to a specialist somewhere, I will mention that.

Well, I was finding coffee an unreliable and unpredictable source for my slight dose of needed caffeine.

I am now on day two of Celestial Seasons green tea.

Any suggestions on some other Green Tea that people enjoy? Preferably affordable ones.

Not sure if you like iced tea, but snapple tea is very good. Also, Lipton makes a great bottled green tea that comes in diet as well.

Welcome.

I was thinking this morning of starting a support group just for folks seeking answers....it is so frustrating and invalidating. It can be crazy making. I was diagnosed with POTS last year. But now have terrible spasms and tremors. They are trying to figure them out one specialist told me I had POTS forever (certainly not true)...and now these spasms are psychogenic. My answer is then...good...great...get it out of my head then. Please!

You know you are not well. Push on and vent here. You can PM me anytime. The only one that needs to really believe you are ill is yourself and God...then you can try to find medical help that can assist. There will be angels along the way. Trust this...even if you don't see it now.

Try to be respectful of the medical community. You will get better treatment that way .... when we show our frustration it seems to leave them more likely to say "she is crazy".. But I would keep showing up at the hospital...I just keep showing up until i get someone to help me!! I want my life back. And I can't get it back if I suffer in silence.

Keep looking.

Erika

Thanks Erika. Not sure how to do the PM thing?

Hi Debra, Welcome to the board! So many of us here can relate to the frustration you are feeling. Many of us have encountered different doctors, all who have had different opinions about us, and our symptoms. Do you find your symptoms are related to standing? Do position changes affect your heart rate and/or blood pressure?

I agree with tearose. It would be great if you could see an ANS specialist at Mayo who could perhaps do a tilt table test for you, and try to nail down what it really going on with you. That may be the first step in getting your life back. It is always a huge relief when that day comes and someone finally listens and validates all you have been though ....and gives you a starting point for working your way back. Keep looking for that.

It can feel like a very long road, but it does help some to know that others have walked it too, and many have improved their symptoms. We are all at different places on that road.

Summer

Thanks so much for the input. It is indeed worse with movement of any kind. I have had 2 positive tilt table tests. Can't afford to go back to Mayo. Sometimes, though, I can be doing absolutely nothing and have a sudden onset of chest pain and elevated heart rate. Nitro used to work. It doesn't anymore. Been on beta blockers, channel blockers, you name it. The dizziness, and inability to focus even to walk are getting worse.

How many of you have to have a silent dialogue with yourself to fight through the feelings?

I was just in Kmart-the further to the back of the store I got the more panicky I got.

Everything was looking weird, got the urge to pee, and my chest felt just a bit tight,

so I went to the restroom and just told myself I was getting out of this "fun house".

Do you have to fight the mental messages and tell yourself you're okay I think I compromised with myself said okay enough we'll go home now. But I did try to convince myself that I would make it out alive, I'm making progress there.

Do you talk to yourself and what do you say?

Yes, I do this all the time. I try to convince myself, you can do this, you can shower and not pass out. Or, I will tell myself, you can handle the pain. It is a constant inner battle. I also wonder if other people can see on my face what I am fighting inside. It's almost like I am embarrassed by how I feel.

I have never posted before, but just can't take it anymore. My symptoms started 3 years ago. Not too soon after having cervical fusion surgery. Started out having a chronic cough, chest pain. Diagnosed multiple times with pneumonia. Since then, it has been all downhill. Chronic severe chest pain, passing out. Extreme fatigue. Gone from one doctor to the next. Been told I have POTS, coronary vasospasms, COPD. Then again, been told it's just anxiety. Been to Cleveland Clinic. The doctor thought it was quite funny that I had been seen by so many doctors, and basically blew me off. Been in and out of the ER so many times. Been on every med you can think of. Now, when the chest pain gets so severe that I can't take it, I go to the ER. The only thing that works anymore is major doses of Narcotics. Therefor, they assume I am drug seeking, and I get treated horrribly. I have lost everything. My house, my job, my car. As I type this, I am living in my parent's basement. I am 38. Sometimes, with the dizziness and passing out, I get a massive headache. I average an ER visit once a week. I found a family doctor that has been somewhat good to me. But I can tell, he is getting sick of it. I have no insurance. Cleveland did put a cardiac monitor in me. But everytime I call them they say it's just beating fast, you must have been active at the time. If laying on the couch in pain is active, well, guess they are right. I sit here now, in pain, dizzy. I go back and forth, Shoud I call my doc? Should I go to ER? What ER should I go to? It's the same routine, each and every time. Sometimes I have gone to the ER after passing out and its very obvious they dont believe me when I tell them that I did pass out. I hate doctors, I hate health care. I hate who I have become. I used to work 12 hour days. Used to be an athlete. Used to have a life. Dont want to go back to Cleveland. Dr.J was so arrogant and cold. Been to Mayo. They did a heart cath and said I did have spasms, but it must be something else since I had pain before they induced a spasm. I have read my records. The docs are all over the place. Some say its in my head, others acknowledge there is a problem. I don't know what to do anymore.