More Hospital Horror Stories ...

[EarthMother]

I read LindaJoy's earlier post this month and it brought tears to my eyes. I know first hand how pain-filled this situation is. And unfortunately in my case I *DO* have panic disorder which makes it even more difficult to get help with new symptoms when they arise.

I was in the hospital for three days this week. My favorite line from one of the specialists was "I don't think you have Dysautonomia, I think you googled it and diagnosed yourself from the Internet. We have stood you up for a blood pressure reading and it was perfectly fine." So here I am with my blood sugar dropping out on me (down to 52 on Monday) shaking all the time and my panic which is normal under control now through the roof -- and the good news is I don't have POTS. Whew, what a relief. Another of the specialists ordered "physical therapy" for me each day I was there ... a nice walk around the hospital with a man holding me by the waist. Do you think they once took my pulse to see that it was 120-130 during the walk, or that I started shaking violently at the end and for the next half hour once back to my room? No. Why should they, I have panic attacks and this was clearly all in my head. I also got panic attacks when I tried to get up in the middle of the night lug my IV around and manage my way to the bathroom. Hyperadrenic response to my POTS -- no, I'm just crazy.

The endo (who insisted I also self diagnosed my low blood sugar problem -- no doubt I'm a google-chondriac) was SOOO dissappointed when she had to admit that I failed my three hour glucose tolerance test. Seems I have Reactive Hypoglycemia (really now?) and something called pre-diabetes. But my shaking is all in my head, nonetheless.

Accept for the neurologist ... who still thinks my primary problem is the panic ... but the brain scan did show some "abnormal" rhythms here and there and she really recommends I get this fancy expensive 24 hour inpatient video scan of my brain (that my insurance likely won't pay for) but that's the only way to rule out I'm not have seizures when the shaking starts. No kidding, the only way to rule out seizures? Then why doesn't my normal hospital have one or any other nearby facility and why wouldn't my insurance cover it?

My two cents on the hospital thing ... I think it should be ILLEGAL to have 12-13 hour shifts for floor nurses and CNAs. We'd never do that with air traffic controllers or other people responsible for human lives. They may think it's great to have a three day work week, but it is impossible for anyone to get quality care when folks are over-tired, under-resourced and totally unsympathetic.

So that's my rant. I should have known better than to go in ... but this silly panic disordered mind of mine thought I needed some "expert" options. Problem is ofcourse I still am getting this huge surges (as my blood sugar is learning to adapt to diet alone) and my brain still keeps yelling Call 911. Silly brain, it's a one-trick pony.

Deep thanks to DINET for helping us to see not EVERYTHING is in our heads (even when some things are!)

~EM

[juliegee]

Aw, EM-

I BELIEVE YOU. I'm sorry you were treated so horrible in the hospital. It really is so frightening when you realize the ER/and your local hospital can't help you when your symtoms get out of control. I'm very glad you documented some abnormal test results, much harder to keep blaming it all on panic...which, BTW, I'm convinced is a psyiological response to your dysautonomia. Your "google-chondria" has led you to better answers and more help than your local "experts."

Big Hugs-

Julie

[Ernie]

Hi,

I am really sorry for your horry story. I had them for 30 years and I am glad that I have medical proof that I have a physical disorder. I still get some bad treatment but it is not as bad as before.

I just wish those who mistreat us would be in our shoes for one month!!!!!

[pat57]

I assume they mean rule out epileptic seizures? There are other causes of seizures. Toxicity and lack of 02 for starters.

Tell them to google it.

[Randi Free]

My 23 year old daughter has anxiety disorder. She was diagnosed with it at age 12 right after a bad case of mono. and my stupid oncologist telling us I might only have months to live. Doubly whammy for her and she was diagnosed with depression and anxiety. When the POTS symptoms first started her PCP did think the elevated heart rate was due to anxiety from being in his office even though we told him it happens at home. She had a good cardiologist listen when she showed up at the ER with chest pain. An abnormal EKG led to a 3 week event monitor which showed heart rates of 150 or higher when she was asleep. That kind of rules out anxiety as the cause of the tachyccardia. She also shows some arythmia. My granddaughter had a 48 hour outpatient eeg which showed seizures and her medicaid paid for it. There are options for that. Maybe an inpaitient stay with halter monitor would help convince them it's not in your head?

Randi

I assume they mean rule out epileptic seizures? There are other causes of seizures. Toxicity and lack of 02 for starters.

Tell them to google it.

[EarthMother]

Wow Randi, your little one has certainly been through so many difficult challenges.

I do have a positive tilt table test and confirmed diagnosis by my cardiologist ... but unfortunately he is at a different hospital. I'm not sure why everyone is talking about seizures ... I've been shaking for years anytime I get nervous or very POTSY. I asked for the neurologist because of the severe facial pain and burning sensations I have been getting. But I guess maybe that could be some strange kind of seizure. Who knows. I just read about that outpatient EEG today, thank goodness there is another option.

One day at a time.

Good thoughts and deep thanks to all.

~EM

[ajw4790]

Jeez.... I wish it had went better, it sounds awful! So, where did they leave it with you? Possibly do that brain scan and watch your diet due to pre-diabetes? Anything else?

So, forgive my brain foggyness, what sent you to the ER? The low blood sugar? I know I too get the reactive hypoglycemia and can shake ALOT. Does it get better if you eat food, drink, and rest? Was your HR and BP reacting as well? If so then could it have been an adrenaline surge or something?

Are you still coming of the Primidone? That could possibly trigger some of this, or cause more anxiety as you withdrawl from the med?

Have you had any other med changes?

The facial pain etc. could be migraines or trigeminal neuralgia, or something else entirely, but a neurologist is probably a good idea. I hope they can help with this.

I hope you are feeling better!

[hollie]

Keep fighting! I believe you too! I don't know how many times I was told I had an anxiety disorder before someone actually took me seriously.

You would think that since your TTT came out with a POTS result, they would all be on the same page. I honestly think some drs. think it's a made up disease. I'm here to tell you - IT'S NOT! I live with it every day and I think if those same drs. had to live with it for even one day, they would be much more sympathetic!!

Hang in there and don't take their ignorence personally, just find someone else!!

Hollie

[Guest tearose]

It is so sad when we are more knowledgeable than the doctors we consult with! Especially when at the ER or when we are in a relapse, it is even harder to be a strong an advocate for ourselves! I am so sorry EM. I hurt for you.

I know you want answers so continue to search for them. You will find the answers!

wishing you great strength to endure these new challenges while you find the solutions,

as always,

tearose