New diagnoses

[morgan617]

Well after 20 years of arrythmias, symptoms that are really icky, and never having felt well my whole life, I finally got a new diagnoses.

I felt off all day yesterday, you know just one of those days you know is not going to be great?

I was sitting on the step and my hubs had gone to the store. I got a sudden blinding headache. I thought uhoh, maybe a tia or stroke or something. I got up and went into the house, and felt very nauseated and like I had to go to the bathroom. I started having very significant arrythmias. Please remember, I've had ablation and I've had years of arrythmias. My head was pounding, my bp 200/100. And runs of what I'm certain were V-Tach. I collapsed to the floor in the bathroom and managed to crawl to my bed and climb up. I thought, okay this is it. Then My foggy brain realized my son was home and he could come up and find me.

I manged to call Dave and told him to come home, and then God help me, I could only think they wouldn't know what to do, so I called 911, so my husband and son wouldn't have to deal with it.

They came and waited for a few minutes to put me on the monitor. I began to realize this was the worst episode and I felt so awful. They took my BP and said it was 198/100. They finally put me on the monitor, but by then things had calmed a little. I felt very nauseated. I told them I was being worked up for Addison's. My husband said I'd been having problems for at least 15 years, so for me to call 911, meant I was really sick.

Stupid stupid me, I let them talk me in to going to the hospital. I said my head was going to explode. They made me walk out to the stretcher so all my neigbors could see. It was so humiliating, I don't even know how I managed it.

It took us 45 minutes to get to the hospital. They didn't use lights and stayed stuck in traffic jams. He started an IV. and took blood.

They put me in the storage room, there was a chair for ent stuff, IV poles, all the junk that doesn't fit anywhere else. They couldn't decide if I needed a monitor or whether they should monitor my bp. The doctor said they always do ablation for autonomic problems. I knew I was in deep doo doo. I explained what was going on. I asked her to call my endo or my primary, she refused. The blood they drew in the ambulance was abnormal, so they drew it again, because it had to be wrong. He drew it while I was still having my episode.

She said bye now....

The discharge nurse came in and said, so okay here's your diagnoses.....drumroll please

Tension headache.........no more to say is there?

[steph37822]

oops

[JaneEyre9]

wow. that is ridiculous. did she write you a prescription for tylenol?

i don't know whether to laugh or cry.

sorry, morgan, that's definitely medicine at its worst.

Kristen

[Laura]

Oh Morgan. You poor girl! I keep reading and re-reading your post, it's just awful. There are just somany things wrong with what you went thru!! Unreal. (you have bp through the roof and they make you walk to the ambulance??!! ) Did you find out what was abnormal with the first blood draw? Any other investigations? I feel just sick about this... Are you feeling better today? When do you see your endo again? I hope you see someone who has a bit of a clue soon. Take care. Laura

[ariella]

Morgan,

Ya know, after having 3 ridiculous ER visits for neuromuscular shortness of breath, absolutely ridiculous and scary and dangerous experiences, this month, I mean, your story made me laugh in some sick kind of way, it really struck home. I am sometimes fearful to tell my ER stories to friends, lest they think I'm making it all up. Sometimes I imagine I'm watching a sitcom, but somehow I got elected for the part..This was totally irresponsible, you have objective findings, a medical history with aggressive treatment...You know that they wrote tension headache only because your other condition, the only one they were looking at, isn't politically correct to write--BORN FEMALE.

Time to get a "what to do for Morgan just in case letter" from someone with fancy stationary.

Hugs

ariella

[Ernie]

Hi Morgan,

You surely have the run around with ER. The whole time I was reading your story I thought that this time they woud come up with something valid because you told them you were having adrenal investigation.

Ernie

[Guest Julia59]

The dumb--%$^&*(& in the medical community never cease to amaze me.

I hate the thought of going to the ER---------------------I'll probably throw something at someone.................

My patience runs thin for this kind of ignorance.

I'm sorry you had to deal with such idiocy, especially when you are feeling very poorly and your body is doing all kinds of crazy stuff to you.

Oh well---add another dumb *$% to the collection.

I hope you feel better.

Julie :0)

[blackwolf]

dearest morgan,

i can only say shame shame on them!

hugs to you and i hope you do feel at least a little better.

as a former cna/med aid, i am kind of embarrassed by the behavior of so many in the medical community.

hugs,

blackwolf

[MightyMouse]

Oh dear. All I can say is "oy vey". Reminds me of the night Teri took me to the ER b/c my bp was outrageous and I had a searing migraine that my meds couldn't help. They gave me extra strength tylenol and some reglan and sent me home with my bp 160/100 and writhing in pain. I was too exhausted to do anything, but Teri, a medical professional, was really ready to kill someone. I think it's got to be awful as a spouse knowing there is really something significant happening but watching the ER staff blow it off as "stress", "panic attack", or Morgan's now famous "tension headache."

Yeah right. Really makes you wonder if the staff actually got their degrees or bluffed their way through. You know it's bad when even veteran nurses and doctors who are members of this board have been treated so horribly.

Morgan, I guess you should count your blessings that they didn't do anything to pysically damage you (like another ablation). Like I said. Oy.

Nina

[wareagle]

Oh Morgan...ahhhhhhh!!!

Okay..here's an idea for a book...we can donate all the proceeds to DINET..let's all compile or horror stories involving the medical community. We can have a chapter on the ER..a chapter on disability docs....so called "specialists" ..ect.

We'll make it required reading for all pre-med students...I'm telling you guys..we could make a fortune!! I bet Oprah would talk to us then !

Love to you all..heres hoping all of our "tension headaches" disappear soon!

[morgan617]

Thanks everybody, for your support. I am still making a feeble attempt to recover from my little headache. My sister went absolutely bullistic and is calling the endo that I thought was so swell who hasn't called and was supposed to on Wednesday. She's very "assertive" so he may not call at all, but the really sad thing is, maybe if he had been on the ball, this wouldn't have happened. Who knows.

All I know is I'm gonna have some honkin bills that are going to give me one big headache. ah yea get it? headache.....

morgache

[MightyMouse]

Maybe you could follow Julia's recent example and send a well written letter to the hospital's big dooh-dahs. Might be theraputic for you. Heck, you could even ask them to rescind your bill given that they didn't provide any diagnostic tests, nor any theraputic intervention? Whaddaya think???

Nina

[calypso]

Oh jeez -- give me a break. Tension headache? With arrythmias and BP of 200/100? Did the people at this hospital go to medical or nursing school on another planet?

Sorry, Morgan, that our health care system has such bad holes in some places in the U.S. I sure wish you lived somewhere where you could receive better care.

Amy

[pattycake]

Morgan,

Man it sounds like you may have recieved better care at a Veterninary Clinic. (Especially my Vet LOL) I definately would write a letter to the administrator of the hospital and have the charges reduced on all the care they did not provide you. What I think some of the medical professionals and I say that loosely is that they have no idea how terrifying an eposide can be. I have often wondered when I am so bad if I will ever be somewhat normal again. I like you sometimes wonder oh man is this it TIA or stroke. I hope you get feeling better soon.

Patty

[pattycake]

Morgan

I forgot I am new to this POTS NMH thing can you tell me what an ablation is?

Patty

[MightyMouse]

Patticake, an ablation is when they zap some tissue on the heart. Some people have nerve bundles on the surface of the heart that cause it to beat too fast, have a dangerous rythmn, or other serious concern. However, you should know, that in general ablations are a bad idea for patients with POTS if the basis of their illness is not the heart itself (and for most POTS folks, the physiology of the heart is prefectly fine).

Many an uninformed cardiologist will do an ablation on a POTS patient thinking that eliminating the tachycardia will eliminate all the symptoms. In POTS patients, the tachy is often FUNCTIONAL. This means that it's a necessary compensation for sagging blood pressure, and the increased heart rate serves to keep the brain, heart and lung tissues oxygenated despite the falling pressure. Ablating the nerves that tell the heart to speed up often results in a POTS patient having worse symptoms than before, as now the bp falls and there is not compensation in increased heart rate, so syncope (fainting) sets in much more quickly.

See the main site for more info under "what to avoid". Ablation is first on the list.

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

[Roselover]

Ya know Morgan, I've read your post and all I can say is that I don't get mad easily, but this makes me MAD! Why and how could they treat our Morgan this way? I'm so so sorry you had this horrible spell and that on top of it you were treated carelessly. Just wanted you to know I cared too!

~Roselover

[morgan617]

Hey guys, thanks all of you and Nina, thanks for explaining how my cardio got his bmw and I got disability....

I just wanted to let you know I am just done trying to help myself and need a break. I am not good for myself, let alone anyone else right now. I will miss you all and hopefully will feel up to "seeing" you guys later. Got nothing left to give at the moment even to myself, and that's too much of a bummer to put on anyone else. You all take care and when I'm better I'll be back.....morgan

[steph37822]

oops

[persephone]

ARGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGGH

HHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH

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HHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH! What is WITH THESE PEOPLE. Are they actually STUPID.

[Sunfish]

okay....steph said it well so i'm not going to try to one up her. maudrypleasedon'tleaveus!!

if you need to take a break from posting as much, etc. to take care of yourself that's totally understandable but at least check in with us & let us know how things are going, k? there are too many of us here who care too much about you so otherwise we might go crazy wondering!

i realize that it probably feels like things can't be any worse...tension headache??!! making you walk to the ambulance??!! i could go on but i might end up getting censored. the degree of rotten care out there never ceases to amaze me.

i wouldn't give up on the endo yet...you have every right to be frustrated by him but something WILL turn around. or perhaps you can pursue the other one? i know that all of this takes time/energy that you don't have, but something WILL turn around one of these days.

hang in there & please check in with us when you can.

feel free to email me to if you'd rather...

love & hugs & smiles,

:-)melissa