Help

[DEBRAA99]

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.

[Noreen]

I am sorry for your pain. Your frustration with the medical system is certainly not unique and through this forum we learn that it is not even limited to one country or system.

It is so very difficult when you are at the bottom to see any possible way out or light at the end of the tunnel that isn't an oncoming train. The members of this forum understand how difficult dysautonomia can be.

If you read the recent posts where Ernie checked back in to let everyone know how she was doing you will see it is possible to regain a life. One of the primary ways we start the road back is exercise - not the type any of us knew prior this autonomic craziness - just do 1 to 2 minutes three times a day and work up and keep working up. I reduced oxycontin from 2 to 3 10 mg daily to maybe 1 a week by building up exercise tolerance as described on this site not as prescribed by the doctors - their way kept setting me back.

Wishing you the best

[Guest tearose]

I am very sorry you are still feeling uncertain how to move forward. My suggestion is to believe in yourself and pursue the answers you need. Take small steps. Make a list of all your symptoms and go through them with a doctor you trust.

Going to the ER and having the pains and passing out is not good.

Can you work with a better ANS doctor at Mayo?

[summer]

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

[erikainorlando]

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

[DEBRAA99]

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.

[DEBRAA99]

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?

[sue1234]

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.

[DEBRAA99]

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.

[Kujiforo]

I am the exact same as you. Same symptoms, same frustration. I used to be healthy and work out daily. I used to have a job. My symptoms started a year ago after a deadly reaction to the drug Elavil. It nearly killed me. Ever since I have not been the same. Some doctors say my plight points towards that drug, some say it is in my head, some do not know what to think. None have ever given me a real diagnoses. I have been to ER countless times, have all the heart tests, my heart looks healthy and fine. "The heart just sometimes go fast." They said. But mine produces such horrible symptoms, and they do not seem to care, as long as it does not kill me. But I do not have a life any longer. I am ill daily, though some days are better than others.

Just saying I'm in your position! Never give up. I'm confident they will find a diagnosis for me soon, and for you as well! Then treatment and a cure! I'm only 24 years old. I want my life back, and by God, I will have it back one day soon.

[MomtoGiuliana]

It sounds like you should be seen by an electrophysiologist (EP) on a regular basis until a good treatment is found--which can take time and trial and error. Probably you saw one at Cleveland, but with a positive tilt you definitely have something going on orthostatically (if that is a word).

[mountain girl]

You are on the right track by joining the dinet website. My experience with the ER is that if you re not having an actual emergency, and they find nothing physically wrng, they are not all that helpful. I would look on the dinet website list of doctors and see who has experience in the area you live. While I live in VA I selected a cardio in PA because his daughter had pots and I felt he would be knowledgable about pots. I believe you aid you did have a positive tilt table test, if I am not remembering correctly, I would thin that to be important in seeing if you truly have pots. I saw a number of doctors too before being dagnosed and it is very frustrating. At the time, I became somewhat angry at the doctors for not feeling like they believed me, but now I think they just truly did not have the knowledge to help me. I kept searching for a dr that could. Dr. Goodkin is who I see in Pa and he has given me hope and helped me more than any dr prior to that. He truly understands and gets that it is not just in our heads. It does present a problem I am sure not to have insurance, and I don't know what to tell you there. I was somehow able to keep working, but did have to reduce my hours and go to a less stressful position. While there were some days I could barely get out of bed to do anything, I did push myself to be up for some part of the day in a sitting position. Try to take a walk even around the house if you can so you do not become more deconditioned. A friend told me you have to be your own health advocate, or have someone who can advocate for you, so keep trying till you get some answers that make sense to you.

[poppetkazutaka]

I agree with the active life before POTS. I would walk everywhere, bike when I got home on the recumbant bike, and walk in the woods behind my house. I loved to get out and about! It was great!

Then the car accident happened and something changed. I just wanted to lay around all the time. I hurt and I felt sick. I would exercise and I never hit that peak of energy that made me feel great. I was dragging and when I asked why my doctor said, "Sorry, I can't help you there" and walked out on me.

So I learned to live with it. Until my heart started to go, and my head, and then I got all the infections, and now here I am, an autonomic, autouimmune wreck who's trying to find a way to get someone to help her get disability because she's getting to a point where she doesn't think work is working out anymore.

[hugs] It's tough when life's taken from you and you're still young. I was twenty-two when I had the car accident, I'm twenty-eight now. But what doesn't kill you makes you stronger and you've found a good place with lots of strong willed people who'll be good friends. :3

[Guest humanb4monitor]

LIVING with it and managing it is why I am here. It is my #1 goal and 2nd is giving LOVE & SUPPORT of a lifetime with this. It is also worse than ever but momentarily (months) it is CFS and sleep that is heightened.

WE CAN TEACH each other. WE CAN! Please. I came up with a list last year of practices that actually worked for a wk. But the Il ost TRACK because I have NO support system and another site didn't seem to think the idea was important. I think it will be different here. I hope.

xoxoxooxoxox

[janiedelite]

Oh, I feel for you. If you're single and get ill, lose your job, it's easy to see how you could even become homeless if you don't have helpful friends or family. I might be naive to ask this, but can you get your parents to claim you as a dependent, then get on one of the group health insurance plans through their work?

I really liked what ErikainOrlando said, "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." I'm sorry that you've gone through so many medications and can't get relief for your chest pain. I take nitro and coreg for chest pain, but it's nowhere near the degree that you describe. Still, it's so scary to have that pain and wonder if it will go away, and what will happen to you. Please keep believing in yourself and doing whatever you can to get to the bottom of this, even if it's just from your bed in your parent's home.