Jump to content

Hospitals


Darlene
 Share

Recommended Posts

I m not one to go to the ER, but before my dx & before meds I was there a few times. The ER Dr. had never heard of dysautonomia, and did not know what to do to help me. I wish more Dr.'s were educated about dysautonomia and knew how to help. Twice I was given an IV for dehydration, but when I left I did not feel any better than I did when I walked in.

Link to comment
Share on other sites

hi i know what you mean.. this past may i went to MUO er and i was treated HORRIBLY.. and left there in tears.. I felt like i was going to kick the bucket.. and they did nothing for me.. and this doc knew dr.grubb....and knew what dysautonomia was.. didnt matter he did nothing.. I do mean nothing.. oprthostatic vitals where done right before i left only to cover there rumps..

Link to comment
Share on other sites

hi there,

my electrophysiologist wrote a letter for me to carry explaining my dysautonomia (POTS) diagnosis, my rapid heart rates, and the treatment being to lay me supine with IV hydration........it helps to have a note like that in hand so at least they know who your primary doc is or whoever it is that is following you with your dysautonomia.....it also helps for them to know what to do for you and to also give them a little insight into what POTS/dysautonomia is (my doc also gave a brief explanation in the letter of POTS because he knows nobody hardly has ever heard of POTS/auto dys and knows that most docs would freak out at the site of my 200 BPM heart rates).............it may help you, if you have to go into the E.R., to provide them with a note/letter from your doc (i'd try to get one from a neuro or electrophysilogist as they tend to take these type of docs more seriously than just PCP's)........

just a suggestion...

Link to comment
Share on other sites

In the UK its even worse, I get no help if I go into A & E when my heart 'nose dives' unlikes most of you on the site I go bradicardic and my heartbeat goes below 40 ..39..38..37..36..35...34...33...32... black out !

The doctors have in the past accused me of ....wait for it this is a good one ' holding my breath ' :lol:

These are qualified doctors, not cleaners or ward porters.............! !

So now when I do go in , and I can assure you I have to be a deaths door 'knocking loudly ' now to be taken in , I have to carry a print out from this site , a letter from my own Doctor , a list of medication from my doctor and my husband to stand over them in order not to leave me going ...........32..31..30..nil!

Nice here in the UK ............. well not for pots sufferers that is .

Willows.

Link to comment
Share on other sites

what used to be MCO (medical college of ohio - where dr. grubb is) is now MUO (medical university of ohio) after merging with the university of toledo.

:lol: melissa

Link to comment
Share on other sites

  • 4 weeks later...

I was admitted last October with uncontrolled postural tachycardia. NONE of the 7 Dr's that I saw new anything about POTS! I even went out of town to see a specialist who were supposedly the best in the province for hearts and he said he had never seen it before! they used me as a ginea pig by showing everyone around what happened when I stood up then lied down. I didn't mind since I felt that I was educating other Dr's-to-be so they would know later on. They still don't know about it in my home town and my family Dr has made no moves to educated himself. I've been the one ordering all my treatment and telling him what needs to be done. I get so frustrated at times because there are still days when he thinks that this is all in my head and that it's just "anxiety". I've had EMS workers argue with me and tell me that it HAD to be drugs that I was taking that was doing this. I mean hello!!! If it were drugs that made me feel so bad, I'd just stop them! I wish there was more education and information out there for Dr's. Although I lvoe this site and it has been the best one I've found. I've been able to find treatments that work for me so far.

Link to comment
Share on other sites

I just know for me I have educated my own doc and made him fully aware that IF I am to go to the ER per his instructions he had better make sure they understand what to do. If this is the hospital of choice for you to go to...EDUCATE them..if you can with printouts on DYS and POTS. That is how I educated my doc..at first he was hesitant to think thisa was an online disorder..

But after reviewing the last 6 yrs. and seeing the TTT results for himself..he has becopme more passionate towards me..and understand ing the ordeals with the ER.

Even the best hopsitals in the world here in CLeveland don't know how to handle POTS all the time..

SO I took it into my own hands..HOPE this helps Northern.

Bee :huh:

Link to comment
Share on other sites

Good advice, Bee.

What i want to know is, how do I make my doctor more passionate for me!?

:huh::o

I think you meant COMpassionate unless there is something you ain't telling us.

:o

Link to comment
Share on other sites

After reading these posts in this topic, it reminded me what two different docs told me was wrong with me before we found the POTS (which I found a doc in my own research and had to make an appointment to see after doing a lot of research on my symptoms and asking around). The first doc told me it was anxiety just because I broke down and started crying a little in his office because I was so frustrated with the lack of treatment and care everyone was giving me when I would see any doc about this and because I was fidgeting (which was me trying to stop from passing out because I had been sitting so long waiting for the doc to come in!!!). So, I stopped seeing him, found a new doc...

Then this next doc told me I had Hyperventilation syndrome (or something of the sorts) ~ I just don't know how to breathe right! How does someone that has been fine for 23 years, breathing "correctly," not getting dizzy go to breathing "incorrectly?" "Bring a paper bag with you everywhere you go," is what he said. What?!?

To test this, he had me lie down on the exam table and make myself hyperventilate to see if I would get dizzy! Wouldn't anyone?!? I would think so! So, yep, I had hyperventilation syndrome! I don't think so. He also told me that he KNEW I would pass out when they give me the Tilt Table Test and that if you take 20 people off the street and give them this test, at least half of them would pass out, even though they don't have any disorder or symptoms. Guess what? I didn't pass out! My heart rate just sky-rocketed way high within seconds of the upright position. And even more so after they pumped the adreniline drug in me.

Doctors, I tell ya!

Sarah.

Link to comment
Share on other sites

thanks for the laugh bee....i needed it.

:) melissa

Link to comment
Share on other sites

That must be so frustrating! Maybe you could always carry a brochure on dysautonomia with you, incase you end up needing to explain it to doctors. I know I get frustrated trying to explain my illness to doctors when I already feel like crap. I should probably carry a brochure too!

Take care,

Shannon

Link to comment
Share on other sites

I know doctors do a lot of good things, but they make me so mad sometimes. SJPrice23, my doctor at Mayo Clinic told me that I didn't know how to breathe right too, and this is after I was diagnosed with POTS. What is with this breathing thing? He said I breathed too fast because I had anxiety. Uh, I was standing up, and he was making breathe fast, yeah I was anxious I was going to pass out. I'm not a doctor, but I do know that.

Link to comment
Share on other sites

Son #2 broke his right ring finger in a fall at college, took him in for pre-op the day before and reminded the Dr's and or Surgeons that he has POTS. They said "we will take extra precautions" and I must say they did. They provided him with special instructions of things to do the day of surgery, at surgery prep they had extra IV's (noticed extra soduim IV bag), and they also had releases from his Cardio, Neuro, Cleveland Clinic and his GP. The surgeon said in the last 6 months he had two POTS patients in late teens or early 20's with sports injuries and one from a fall. I guess in a College town this can be expected. I was impressed with the care at this hospital.

Dad of a POTS son

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...