Morgan at the Hospital

[Poohbear]

Morgan---WELCOME HOME!!!!

But....I'm so mad for you!!!! I was about to go to bed but now I'm so angry I don't think I can fall asleep too quick.

Well, the best advice I could offer you, but I don't know if it's possible for you, is to find a good psychologist. Hear me out on this one.....this is what worked for me. I found a psychologist (it does seem that their word carries more weight in issues like this than a social worker, LPC etc) who listened to me, did her evaluation and spent several session with me. Then she wrote a letter that I demanded be placed in my permanent medical record that essentially states that while I do have some depression, anxiety and some issues I'm dealing with that all of them are secondary to my physical condition. It is my physical condition that causes heart rate fluctuation etc. I supplied her with info on POTS and she totally "got it" and has been my biggest advocate. I have had NO LUCK to date with psychiatrists but I am in search of a neuro-psych to see if this will make a difference.

Just so you know, in case you need some validation, I have episodes similar to what you are describing although mine don't last as long as yours. I can have tachy in the rate of 130-150 for a day or two with no break but when I have the "seizure like activity" it usually only lasts a minute or two. I am able to hear and understand everything around me but unable to respond. I was told they are subcortical seizures and thus do not show up on EEG's. When I have really bad autonomic storms my potassium always drops and nobody has figured out why. Seems like I read in a research paper a while back the theory is that when the body is under stress it uses potassium and that might explain why, in episodes, we loose potassium.

I think I would have been tempted to tell the so-called "Dr" something like, "I don't pass out intentionally, I don't get sick intentionally but there are other things I do intentionally" I would have said it with a sinister end and let his imagination run meanwhile, I would fantasize about destroying him!

Hey....you should have used my earlier suggestion about collecting the packets of sugar and when he asked what you were stressed about you could have said, "Well, I'm afraid I will leave here and not even have a cup of sugar"

Or...you could play with their mind..."well, I don't know Dr. What were you thinking about before you walked in this room? Did you fear maybe you don't know what you are doing? Maybe the thought occured to you that you don't even know that you don't know what you are doing? What are you stressed about?

UUGGGGHHHHH!!!! Yikes!! How awful. I'm glad you survived the ordeal and are at home.

PS--I've experienced the "political" stuff too. Recently the home health nurse wanted me to go to an infusion office because the home health nurses have such a hard time getting a vein and they though infusion office might be better. They wanted my Dr to write orders but my Dr wouldn't because it's a hospital close to my house but not one he has privileges at and conversely, the hospital doesn't want to acknowledge his order even though the cardiologist affiliated with their hospital all tell me they send patients like me to my Dr. It's all politics...everybody wants the money regardless of what's best for the patient or how far you have to travel to get care.

[morgan617]

Actually Poohbear, I DO have a letter from my therapist that does state the only psych issues I have are depression secondary to chronic illness. I told the butt that, but of course she couldn't be as good as him, because he's a real doctor. However, a real doctor would have seen how sick I was. But you are right. When they charge 300 a visit, of course they can come up with anything.

I was pretty unhappy with him, and the nurse couldn't believe it. He said, how long has he been a doctor to know that a person can't have symptoms like yours on purpose? He said, just don't listen to the jerk. That made me laugh, that he was so out spoken.

I did like your responses. Too bad I was busy faking my illness and didn't have time to come up with some things.....mymommydidntlovememorgan

[Aprilmarie52]

morgan, I cant believe that they treated you so badly. It is sad that some people go into the medical profession and dont care if they help people or not. Maybe you should go to a hospital far far away from that one. Welcome home. Get lots of rest and try not to think about your childhood issues too much. We wouldnt want you to get upset and get tachy again.

[Poohbear]

Mymommydidntloveme Morgan,

Mine didn't love me either so maybe that's why my potassium drops and I pee too much during those times and my blood levels get all messed up.

Seriously though....I know you are probably totally exhausted but are you able to maybe write a letter to this "psychiatrist" or to the board that liscensed him and declare below standard of care. Document your therapist (who has worked with you where this idiot has not) has established that depression is secondary to chronic illness, maybe print an article or two about POTS where it states many patients are misdiagnosed with anxiety & psychiatric illnesses to back you up. And at least demand that you not be responsible for his charge?

Hope you're able to get some rest.

What's next for you? Are you waiting to go to the EP to see what they say next?

[Ernie]

Welcome home Morgan,

I am glad that the EP does not want to do the ablation. You are suffering enough from the first one.

Your stay was so pathetic. The problem is not only that they don't have the knowledge but they don't have the desire to help.

The psychiatrist went way overboard.

I am sure you would like to have your life back rather than "faking your illness".

[JaneEyre9]

I'm so sorry you're suffering Morgan. It's really unfair. I don't understand why things like this keep happening. I don't know what else to say other than, I care!

Kristen

[DancingLight]

Morgan,

I don't know what to say either...except that I have beeng thinking about you so much. I have thought and thought about what has been happening to you. I lie here and think about it and wonder, Why? and I feel soooo incredilby scared and sad for you. I wish there was more that I knew to say or to do. My energy is so poor, I want to be sending you snail mail and doing so much more that my body won't let me. It makes me feel like I am not doing enough for you in this awful time. I want my goofy, gabby weenie mom back and I want the docs to do their darned job!

Many hugs your way...

Emily

[michiganjan]

Morgan,

I have been reading all the updates since I heard you were in the hospital. I am so sorry you have had to go through all of this. I hope you are able to get some answers that will help you have less symptoms.

I am keeping you in my thoughts and prayers.

Michigan Jan

[morgan617]

You guys are all SOOOO nice... It has been a great comfort to me to read your posts. My husband said this morning this is how he feels about the guy. He said, he thought you were okay until he got the report on what our insurance pays and THEN he realized you are a nut ball. He made me laugh so hard, even though I feel like crying. If my husband can see this I don't know why all these smart doctors can't. I will never go see this man because he lied to me. He told me he didn't think I had psych problems, then did a 360. He just flat out lied. I never trust anyone who lies. Ever.

Anyway, today I had a little tiny fainty, but I guess it wasn't too bad cause no one was around. They asked me if I had these spells when I was alone. I am alone all day, DUH.

I follow up with the ep doctor in 2 weeks and my primary in 2 weeks. I was bad mouthing one of the eps Dr's here in town and he agreed he had done a bad job. Later when their office called to give me appt I found out they are partners. oops... Oh well, he works with him, so he would know what a jerk he is. Dave laughed for a half hour over that one. But at least I'm honest. Of course it's because my mom hated me, but never the less...

I am going to go back to my therapist and get another letter from her to take to any appt I have from now on. She just gets livid about this stuff. It took her a long time to tell me what she thought was wrong. It's amazing the people that can diagnose you in 5 minutes.

Okay, I'm going to count to 3 and when I say 3, all of you are going to be cured....iamgettingverysleepymorgan

[dizzygirl]

JESUS!!

Oh my morgan.. I am so sorry for how you were treated in that hospital and by those doctors.. it is just so wrong!!

I wish that I had words of wisdom for you.. I just wanted to let you know that I am rooting for you.. and sending prayers and hugs and all that mushy stuff your way!!

Oh and I want to second Nina's commenet on committing some felony's...I'll help!!

please take care...

[ariella]

Morgan,

I'm chiming in here real late, been away from the computer for a few days. I am horrified. I imagine you live in Canada and cannot possibly sue once they figure out the real diagnosis?

If your ANA is elevated YOU MUST SEE A RHEUMATOLOGIST or IMMUNOLOGIST Autoimmune diseases cause very interesting phenomena over several body systems, and could be very dangerous if not gotten under control. My positive ANA was taken very seriously.

Oh, BTW, no psychological illness can cause what you are going through, nor cause a positive ANA. I know you know that, but it's good to hear. What they did was criminal, because it will make it psychologically harder for you to seek medical attention when you need it. I have an aquaintance who was told that her respiratory crisis was in her head and she could go home, without even doing pulmonary function tests. She used reverse psych on them and said, ok then, send me a shrink fast, because I must be really messed up. The shrink saved her life by insisting on pulmonary function tests. She was sent to the ICU where she remained for 3 weeks. They told her in the ICU that had she gone home, she would have probably died in the night. This was at a major, high level medical center.

Thinking of you and saying a prayer,

Ariella

[morgan617]

This morning my hubs said, they were playing with me to get me to say what they wanted to hear and I should be more careful. I completely exploded, stating I did not play games and would not play games. Good or bad, crazy or not, people can think what they want, they will regardless of what I do or say. So he had me do my bp because I was sooo mad and it was a whopping 106/50 or something like that. pulse 83. No matter what anyone in this medical community thinks, there is something wrong, and I don't give a rip anymore. I won't play games, I won't lie, and my life will not be dictated by insecure little men and women that who's egos can't deal with not being able to figure something out. I will never get anywhere here, and you know what, that's okay. I don't need them to validate me anymore. All these people on this site. Most of us have never met, but we can all relate to each others problems. This tells me without a doubt that there is something wrong, and it's not our fault the medical community chooses to remain stupid and uniformed. It affects our health, certainly, but it should not affect our right to not feel well and to be denigrated and humiliated for it. There will come a day when people will look back and say, man these guys were barbaric with these sick people, I wonder how they slept at night. Ahhh, but we will know won't we.....nottakinanymorgan

[Poohbear]

Keep up the fight Morgan!!! I'm sending e-vibes or e-energy or something like that (not that it really helps but just so you know my thoughts are with you)

It is sad what some members of the medical community do that actually harms people. I don't know if I've shared this story with you guys or not but almost 2 years ago my mother became ill, initially went to an ER (she and my dad were traveling out of state), they didn't do much for her but sent her on her way. Within 2-3 days of that she was confused and disoriented. My dad cut the trip short and they went home. He barely got her home before she slumped over and was unconscious. Took her to the ER and they kept her for a few days. Each passing day she got worse and had really odd behavior but all of her tests came back "normal" so they sent her home. I was livid because she was acting psychotic and couldn't be left alone. A day or two later she complained of chest pain so 911 was called. She got admitted. By this point she didn't know who family or friends were. The Dr's couldn't find anything wrong with her (no evidence of stroke, heart attack, electrolytes were ok etc) so they sent her over to a psychiatric unit. Again, we were livid because my Mom had never exhibited any signs of mental illness or psychosis. This was a sudden change that developed after a severe headache. By the time they sent her to the psychiatric hospital she was even worse off and the Psychiatrist immediately said he didn't know what was wrong and although her outward behavior seemed psychotic he knew there was something physical that had caused it. He got on the phone to have her admitted to the hospital side (vs. the psychiatric unit) and she went into a coma. My mother was in a coma for 3 weeks and it was only when she slipped into a coma that the "Dr.s" were forced to realize something was really wrong. She eventually came out of this but to this day we don't know what happened. They did all kinds of tests, genetic, chemical,drug and metal testing, hair samples to try to detect any rare substance or toxic thing she may have come in contact with. Nothing showed up. At first they thought she might have the human form of mad cow but that turned up not to be the case. In the end, the Dr's said it must have been some weird virus but she never ran a fever until the time she started coming out of the coma. Her blood pressure crashed on several occasions though and she nearly died a couple of times (she's had high blood pressure all my life).

It was a really scary time and who knows what might have been prevented if the Dr's had taken her and us seriously from the beginning.

Anyway, it is really scary that so many in the medical community chalk things up to psychological if THEY don't have the answer. Thankfully, there are some really good Dr's out there who don't do this and I hate that they get a bad rap but so many Dr's have ego's that are WAY to HIGH!

[briarrose]

Morgan

I'm so sorry and angry for your situation. I can't believe their attitude.

I also can't believe that they told you that you shouldn't feel crappy from a blood pressure swing like that. GIVE ME A BREAK! We all know that feels like crap.

At a time like this I think of Chris Calder's Mind Experiment for a doctor. Morgan what medications are you on currently? And not that this will make you feel any better but when I first started with the tachycardia it wasn't positionally for me either, I would be laying in bed doing 160 trying hard to fall asleep for hours. Hang in there and advocate for yourself, don't let them do anything to you that you don't want and INSIST on what you do want!

[briarrose]

Hey Morgan

I asked you what meds you were on and I see them at the bottom of your page. I noticed that they don't have you on a beta blocker to help control the tachycardia and they have you on Valium. I take Valium sometimes for muscle spasms and it actually is one of those medications that can be dangerous for people with Dysautonomia. I'm wondering if they can't help you more by adjusting some of your medications.

[Guest Julia59]

Morgan, I'm so sorry you had to deal with this insane ignorance once again, you deserve better! I follow your posts all the time. I'm so saddened by this terrible ignorance in the medical profession.

I would go on and on----but everyone here has pretty much said it already. I won't send any more of my ramblings on the "ignorant medical society issues".

I just get worn out just thinking about all the dismissed POTS patients........................................................................

............................................................................I just wish I knew of a way to pound this in their heads and make them listen. People are really sick here----they need to stop smoking what ever it is they are smoking and get moving.

I hope things work out better for you soon.

Julie :0)

[mom4cem]

Morgan,

So sorry to hear or your ordeal and lack of help you were given. Compassion is lost in many physicians these days, sadly. I am not on the forum often but I do like to check in when I can so sorry that this is late.

I hope you are feeling bette today. You sound strong and that certainly is one for you since all that negativity from the docs can certainly knock anyone down.

Hang in there!

[stellakitty]

Hey all!

i usually lurk, but when i saw morgan's post i used had to reply... i've actually been sent to a pysch hosp, because doctors deemed that i was suicidal (entered the ER with a paring knife protruding from my gut). the pyschciatrist at the m.h. decided i had a dissassociative disorder (multiple personalities), because i couldn't remember how the knife ended up where it did. i had a week long EEg last week, and when it came back negative for epilepsy, i was diagnosed with a stress disorder by a NEUROLOGIST!!!! i don't know where i would be without my mom, she tends to keep me on the positive side. we are able to laugh about all of the incompetent docs. lucky for you morgan you have husband who is the same way. keep you chin up, and things will get better!

alexa

[morgan617]

Briarrose, I wanted to apologize to you. I started a new thread because this is so dang long, but wanted to make sure you saw this. I was coming off an episode when I posted last night and they seem to affect my personality. Sometimes, rarely, I feel sort of euphoric, mostly teary for no reason, and once in a while, irritable. When I reread that post this morning I realized I sounded really cranky. I did not realize it last night.

What I was trying to say I guess, without sounding like the wicked withch of the west, was that I have tried so many of the meds pre ablation, and since then, everyone is a little nervous about giving me anything. We all have things that work and don't work for us. The two drugs I take, I can tolerate and they both help me. I can't say that about too many others.

What makes one of us feel absolutely horrible can be a real lifesaver for someone else.

Anyway, I just wanted to say I'm sorry I sounded so short. I don't seem to see these changes in my personality unless I see something like this. Odd. My husband says my speech has gotten very halting and hesitant and I don't pick up on that either. But then, with my childhood issues I can be oblivious, right????? Unless of course someone is not looking....sosorrymorgan

[MomtoGiuliana]

Morgan

Sorry to be late to respond, however, I just want you to know I am thinking of you, and want to offer my support--however meager it is for you.

I am sorry the hospitalization was as bad as you thought it might be, as far as getting anywhere with a clear explanation of what is going on with your body. And having to endure another round with a psychologist/psychiatrist of all things just adds insult to injury. Your description sounded all too much like my hospital experience--and probably all too many of us. I cannot believe they went so far as to suggest something so explicit as unresolved childhood issues. That is just bizarre.

Will anyone else review the work and studies done at the hospital? Perhaps someone competent can see something no one else has so far.

Katheirne

[briarrose]

Hey Morgan

Thank you for the apology but I understand what your saying and I'm just very frustrated with you since I've been in a similar situation. I've spent countless hours researching and talking to people and doctor's as I'm sure most of us have.

I've put up with the doctor crap and them telling you how you should feel when they don't have a clue. I'm upset that they told you that a swing in your blood pressure shouldn't make you feel as bad as you are, we know better.

I've come to realize that there are very few people that really understand this illness and can really help treat it. I know that the doctor's prescribe medications to us that were intended for other illnesses because there side effects help treat some of our symptoms. I also know that sometimes doctor's are reckless, careless and inept.

I'm sorry for all that your going through and I hope you find someone that can help you soon.