Just In Hospital Again, Tachy.

[LindaJoy]

Hi, everyone.

Honestly, I hate to even bring any of this to your attention, but I just don't know what to do anymore. I had to be admitted to our hospital overnight for observation since I was tachy and dehydrated, and it took awhile to calm down and plump up. The ER doc wasn't comfortable with my going home until I slowed down. I was pleased to find a doctor who actually cared and showed some concern.

Anyway, after a day, my system was doing better (just came off of Zyrtec. It did a number on my nervous system. Was having MAJOR anxiety. After coming off, had some trouble adjusting. Should have known better than to take it at all, for any length of time, after the first few days of having tachycardia with it. But, I was being stubborn.)

The doctor who was my in-hospital doc ran some tests. He tested me for diabetes insipidus (did a three hour water deprivation test and said I was fine, didn't have it), ran a blood test for thyroid (said yes, I need the Synthroid, yes, I'm probably having side effects from it, but oh, well, I need it), said he didn't believe in my allergies (wouldn't call my allergist / immunologist for verification of my eosinophilic disease), then said that he didn't believe I have dysautonomia, that it's never been proven and that most of my docs are in agreement that it's psychological. I asked if he had called my Cleveland Clinic doctor for verification of my condition. He said no and that it was my CC doctor who said it was in my head. I asked who that doctor was and he said he couldn't remember the doctor's name. How convenient, I thought. So, he said, "You're going home in the morning." I said fine. Which, I was fine to go home, don't get me wrong. I didn't want to stay in the first place. I just didn't appreciate being treated with such indignity. When my nurse approached him about calling in a neurologist to make sure my dysuatonomia was under control, he told her flatly, "She's going home in the morning."

I've written him a three page letter, telling him how much I don't appreciate his treatment of me while in-hospital. I included reports from several doctors, verifying my dysautonomia, the latest being Dr. Chelinsky, from Case Western, in Cleveland, where he wrote, under diagnosis, "Generalized dysautonomia with recurrent bradycardia, GI dysmotility, POTS / migraine overlap." I don't think I'm misreading this in that Dr. Chelinsky believes me to suffer with dysfunction of my autonomic nervous system, right? Or, am I reading into his report something that isn't there? I'm beginning to doubt myself.

I also included reports from Cleveland Clinic, OSU and Mayo, whereby tests have shown autonomic dysfunction, or the doctors have said that my tests and / or symptoms are consistent with POTS. Dr. Shields, at CC, said I have tests and symptoms that show neuropathic POTS.

I don't know what to do anymore. No doctor is treating me for my neuropathy or POTS because they say it's not progressing and that there's not much they can do aside from what I'm already doing. How do I convince these docs around here that my disorder is real? I feel like going to the newspaper locally and telling my story, but I don't want to upset what little care I do receive.

I just needed to vent and ask for some advice here on how to handle this. My charts are full of "anxiety" and "depression" diagnosis, I know that, and I know you've all been there, too. I know my attorney can petition for my records to be changed, but I can't afford that. Any suggestions?

Thanks.

Lindajoy

[momofsara]

Linda--So sorry to hear about another disbelieving doc. Seems that there are lots of them out there. My daughter has run across a number of them and I certainly can understand your frustration. We've been there soooo many times. I just dont know what the answer is, but please know that we are in sympathy with you and we understand. Good luck with your further treatment..... Susan

[MightyMouse]

First off, I would NOT authorize any new doctors to access your information from this hospital if the records state that your dysautonomia is anxiety based. That's just my 2 cents on that one.

Second, and i know this is the frustrating part, it's not always possible to convince a doctor that of something when the attitude they come with is so wholeheartedly anti-something. I don't have the time or energy for that kind of stuff, so I move on and find a new doctor that is either willing to learn, or is already known to be treating folks like me.

I hope that writing the letter helps you to feel better. Also, I would contact the hospital's patient representative. All hospitals post the name of this person somewhere, along with patient rights. If you've not cc'd your letter to the in-hospital doctor, I would do so to the representative, to the hospital's CEO/President, etc. I would make a stink about striking any inaccuracies from the record and stating that just because a doctor isn't familiar with disagnosis or treatment of autonomic problems, it doesn't mean your problem isn't real, isn't physical, and it's is offensive to be treated in a manner that minimizes or ignores the impact it has on your life daily. You might even state that psychologically, it can be difficult to cope, but that you do cope, and find it offensive that the doctor basically played the "blame the patient" game because of his own ignorance.

If you REALLY want to set off some alarms in their heads, you can say that your treatment "failed to meet a basic standard of care" for you; insisting that your heart rate and gi functions are anxiety related is irrelevant if you had you continued to be either tachy or brady. Your body needs the treatment to be stabilized and had he continued to insist that you be discharged, you could have been in serious trouble.

Okay, can you tell I'm fired up? It's really infuriating and I'm mad on your behalf. Hope you get something fruitful out of followup on bad care.

[dsdmom]

Just want to echo what Nina said - I don't think this doctor is going to change his mind - he sounds like a real jerk. However, if you want to be heard, I would write a letter to the patient advocate at the hospital (and the head of this doctor's group if you can find a name) telling them about your displeasure...and be sure to cc: this poor excuse of a doctor so he knows how much he screwed up. Maybe even cc: your docs at the cleveland clinic so he has to eat his words. He may be more apt to care if he knows others are being informed.

[juliegee]

Oh Linda Joy,

I hate that this has happened to you. Of course, you felt frightened and vulnerable in the hospital, but then to be blamed for your illness... Definately follow Nina's suggestions. She's right on the money- as usual.

I recall that you had major allergy issues and at one point your docs suspected mastocytosis/mast cell activation disorder. I am surprised that you had such a reaction to zyrtec and would suspect that you would be taking antihistamines regularly... Are you taking any other antihistamines (H-1, H-2 Blockers)? Ranitidine, benadryl, singulair, claratin, allegra? How are your GI symptoms? I am dealing with similar issues and will see Dr. Maria Castells at Brigham and Women's to explore MCAD as the reason for my POTS, etc.

I really hope your symptoms calm down ASAP and you are able to notify the hospital about your mistreatment.

All the best-

Julie

[Sophia3]

I also want to second what Nina said.

Raise a stink to all persons possible. You can't change the arrogant/ignorant doctors thinking but YOU CAN raise flags of insulting, INADEQUATE care for the reasons Nina mentioned.

Write your letters and YES include the CEO. I did that 25 years ago over a snotty billing person once ....and got a very nice personalized letter from the CEO. So it does pay to write to all the powers that be, INCLUDING the top cat.

[morgan617]

Linda, I am so sorry, this is the story of my life, so I can certainly empathize, as can many.

It sounds like you were taken care of by a hospitalist, and they have bosses too. I would find out who that is and let them know what happened. Unfortunately the only reason it might make a difference is because of money, but you have to go with whatever works. Even if it were a "psych" problem, which it is not, you deserved the same care as anyone regardless of who or what they are.

I would state that in a letter and send it attention to who ever is in charge of this group. I actually got a letter of apology once. I know for certain this guy did not change his mind about me, but I do know he was disciplined for his behavior. And if nothing else, it either really made him mad or humiliated him or both. And sometimes revenge is all we can hope for.

I keep hoping for that letter that says they found my mutant gene, so I can send it to a particular neuro and tell him to put it where the sun never shines. (Maybe that's why I haven't gotten it, do I really want to go to his level?) (Sometimes )

I am glad they did get your tachy under control and hopefully, at least physically< you are feeling better sweetie...morgan

[MightyMouse]

Julie, I should mention that I recently switched from brand name zyrtec to an otc version put out by Target as a generic... and for the first time in my life, I experienced anxiety (up until now, I'd never had a real episode of anxiety--bless those of you who deal with it daily as the few hours I had were unbearable!).

It took me only 3 doses to figure out it was the medication... did you happen to take generic? or was it brand name? just curious.

here, here to what others have said here.

Nina

[Maxine]

I don't know why some of these doctors underestimate our intellingence. Don't they know that diagnosing a psychological origin to your physical symptoms takes a highly specialized psychiatrist to make that kind of call? They just can't assume this is a psychological issue without testing to rule out actual physical causes. They need to access your medical records and READ them. I don't believe someone from the CC said this is psychological.

Either way the doctor is wrong to have been so dismissive of such serious symptoms, and should have taken the time to do his job.

I access all my medical records myself, and anything that mentions any type of psychological cause to my physical problems is thrown in the circular file. If anxiety, depression ect. is mentioned secondarily to my physical problems then I don't worry about it. Of course we all have some psychological effects from our PHYSICAL illness. IN FACT, I think some of these obtuse physicians underlie some of our anxieties. Who wouldn't be affected by some of these arrogant doctors who can't get a grip and just admit we might know more then they do about something---and just deal with it. It would make them a better doctor, as good docs listen, and LEARN from their patients.

I'm angry for you too! When will this ignorance combined with arrogance ever end???

I hope your letter is taken seriously, and someone gets their head out of their rear end and does something.

Maxine :0)

[dsdmom]

Julie,

I just wanted to say that I am from Boston and have spent a ton of time at Brigham & Women's and have heard WONDERFUL things about Dr. Castells. A couple of my specialists have raved about her - so hopefully she'll be able to help you!

[lloppyllama]

In regards to the doctors telling you that there isn't anything they can do to help other than what you are doing, doesn't necessarily mean they don't believe you, this is just a illness where there isn't much Dr's can do. I'm sure you already know this, and don't need me telling you, but just thought I would remind you that there isn't always going to be much that a doctor can do for you, because you are already on meds and know how things work with salt and fluids.

Good luck, sorry things were so bad the other night, I had a pretty bad ER visit myself lats month, so I know how you feel!

Mary

[LindaJoy]

Thank you, everyone, for your support. I'm sorry to have upset some of you, but I appreciate your anger on my behalf.

I'm taking your advice and sending the letter to the CEO of the hospital, a patient representative, and the doctor himself. I don't expect anything in return, but it will make me feel like I'm at least doing something and not just lying down, accepting this miserable treatment.

Julie, it's been found that I don't have a mast cell issue, but an eosinophilic disease (eosinophils are white blood cells that also play a role in allergy, I think), and they attack allergens in my GI tract all the time, causing me pain, inflammation, etc.. I take allegra twice a day, gastrocrom before each meal and am on only three foods and an elemental formula. I've gained weight and feel a bit better, but not by much. Thank you for asking and good luck to you as you see the new doctor about your issues. Please keep us informed here!

Nina, I wasn't taking generic, I was taking the regular Zyrtec, and I was told that it's usually tolerated very, very well. I had read somewhere that Zyrtec will make the side effects of Synthroid (which I'm on) come out if the dosage is too high of the Synthroid or if one is sensitive to the Synthroid's side effects. I believe that would be me. I'm better off of the Zyrtec--I agree with you: if that's an anxiety attack, bless those who have them daily because having one is a horrible experience! I was beginning to have three and four a day. It was horrendous! I still have a lot of nervousness, especially in the morning, right upon waking.

Again, thanks, everyone. I'll let you know if I get an apology from anyone on my letter.

Linda

[cardiactec]

that is such nonsense it's not even funny. i couldnt even read your whole message because it sickened me to read how horribly you were treated. dont listen to any of it. that doctor obviously had no clue, and will never unless they go through what all of us go through on a daily basis living with dysautonomia. how ignorant. ignorance truly is bliss.

I WISH it were all just psychological, because then at least they could TREAT the problem and I could have my life back. I'm currently going through some problems in trying to keep my job because I cant perform parts of the job without terrible flare ups of POTS. it makes me mad to think some doctor is saying that this is all psychological when I have been busting my butt to try and get myself into the EP lab, to work in the EP, because I LOVE IT, but I cant because of my physical limitations due to pots..........it really hurts ME to hear of your experience with this doctor, because unfortunately there are other doctors like that who think the same way....................pots has been a hindrance in my life, and has prevented me from doing things i want to do...it is a terrible hardship....how dare this doctor, with you, with others with dysautonomia belittle our experiences and do not validate what we go through by trying to understand what we have to deal with, instead of putting us down with their "it is all psychological" diagnoses .......how dare this doctor, and others, think the way they do about dysautonomia.

hang in there, and i am sorry sorry you had to listen to such garbage. try not to let it get you down.....

take care, and hang in there.

[medicalenigma]

Linda

I am so sorry you were treated this way by those who you are supposed to put trust in. My heart really does go out to you as I had the same thing happen to me last month when I was in the hospital... not for POTS but for another diagnosis I have... drs wouldn't believe me and said I was a perfectly healthy 35 year old blah blah blah. I had to get a hold of my medical records for something and I actually read through them (NEVER do that by the way unless you have very thick skin!!!). The drs wrote about me that I appeared anxious and depressed and that my "alleged" medical problems did not show up on their testing (which was basic blood work btw) and that many of my "alleged" medical conditions were probably manifestations of anxiety and psychiatric referral was recommended... by the way.... before my surgery, my grandfather passed away the day before and I was paralyzed from neck down and in the worst pain of my life and we didn't know if i would ever walk again so who woudn't be anxious??? As for my "alleged" medical conditions, I gave the drs at the hospital names and numbers of my specialists who could have told them more about my REAL conditions but the idiots never called or requested any records or a specialized test that showed evidence of my illness in black and white!!

I for one have no faith in drs anymore... there are a few good ones still left but finding them is like finding a needle in a haystack!! (and I speak this from being a long time patient and also having worked w/ drs in the healthcare field)

I hope this lack of understanding and pure cruelness does not happen to anyone else here and again, I am so sorry it happened to you

-NJ

[juliegee]

Hey Linda Joy,

I'm glad your docs identified the GI eosinophilic disorder and I'm even happier you are able to eat a little bit and are gaining a tiny bit of your weight back. Eosinophilic disease and mast cell activation disorder are both fairly newly identified disorders, not recognized by many physicians. There is much overlap between the two. The symptoms you describe and the meds you are taking are very commonly taken with mast cell activation disorder. Gastrocrom is actually a mast cell stabilizer.

I don't mean to suggest you have a disorder that your docs say you don't...but I would suggest you probably haven't gotten to the bottom of things yet. I hate that zyrtec gave you such a bad reaction, but I'm glad you are taking Allegra as it's an excellent H-1 Blocker. Many with MCAD have to take a combination of H-1 Blockers (like zyrtec, allegra) and H-2 blockers (like zantac, ranitidine), and gastrocrom. Sometimes the addition of singulair is also really helpful. It's only when the combo is right that real symptom control and some semblance of a normal life can be achieved. If you think it's be helpful, check out: <tmsforacure.org> to learn more about MCAD.

Keep us posted on your progress. I follow your posts closely as I can relate to so much of what you're going through. AND, I'm so proud of you for writing that letter. At the very least, I hope it changes how that physician treats the next patient he can't easily figure out.

Hugs-

Julie