Just need to vent!

[Guest Belinda]

So I go to the E>R> because I keep getting the feeling that I am not breathing correctly or my body isn't functioning well with my oxygen,last night I had unbeleivable chest pains.

I go there tell them my story they take me back and do vital and of course I have tachy.

I know they did tests for heart attack and clots. But in the mean time I was feeling like I could not breahte right. I told the Doc. about the dysautonomia, and broke down because I am so sick of not feeling well.

And he freakin sent a psych. evaluation because I was honest amidst my crying and said I am frustrated and feel like jumping off a bridge.

I just have to vent and say that my ex- husband beat me for like 6 yrs. It was bad enough that I had to have stitches taken out of my face when i left the hospital with my youngest son9after he was born)

I left that ANDwent to therapy and the therapist said I think there is physically something wrong with you.

No kidding?

So back to my story, anyways I was just really upset because A. I don't feel well at all.

B. I let my sons dad have him for like the last week. Which shows that I am weak.\

So yes I guess I am in bit of crisishuh? I have no family and just moved and am waiting to find out which Dysautonomia I have so I can get some treatment. In the mean time I am reallly having a hard time just functioning.

I am looking for supposrt groups around but have found none.

Thanks for letting me vent I hope you all had a great Thanksgiving and I don't mean to be so negative.

[Dizzy Dame]

Belinda, did they find anything to explain your shortness of breath?

Also, I learned early on, that I have to remain composed and even chipper when I go to the ER. Most of the time, ER docs have never heard of Dysautonomia, so I tell them I have Autonomic Neuropathy (since I do). Then they take me more seriously and consult a neurologist, and also usually call my POTS doctor.

When I first got sick, I had a similar breakdown in the ER, and they put me in the psych ward with "panic attacks". That was a mistake! I was almost attacked by one of the people on the psych ward (a girl ran at me but the staff grabbed her in time) Imagine what that did to my heartrate!!!

It stinks having an illness that is rare and unheard of. We have to learn ways of making the doctors take us seriously. I hope you feel better though. And don't feel bad about what happened in the ER, it's not your fault that the doctor was an ignorant ****.

Cheers,

Lauren

[Guest Belinda]

Their diagnoses on the shortness of breath was "I DON"T KNOW" and unrelated chest pain.

I was only on a monitor for my heart and O2 levels for about 5 seconds.

[Dizzy Dame]

They did rule out blood clots, right? Please tell me they did a CAT scan.

If not, and you're still having shortness of breath, you should call your doctor right away, or (and I hate to say this) go to a different ER.

I've heard that people with POTS have a higher chance of developing blood clots because our blood pools all the time. Two years ago, I developed a clot in my leg that killed my right femur. The entire bone died! If that clot had lodged in my brain, or heart I wouldn't be writing this post right now.

[Guest Belinda]

Yes they ruled out bood clots by blood test Diamer Quantitive? They did no cat scan.

I was sitting there telling the doc. I feel weird like I can't breathe I was not panicky or anything and this has been going on for three days.

It's not like I can't breathe it just feels weird like my oxygen is being compromised.

They did do X-ray. And the notorius EKG. Tachycardia like usual.

He told me GOOD LUCK> Diagnoses unconfirmed chest pain(DON"T KNOW) and Depression.

Uh-yeah who wouldn't be depressed right now with this.

I don't know what to do anymore. I don't know which ER to go to because arond here they all stink.

And I could drive 40 min. to CLeve. Clinic or Akron but they will probrably do same things and say don't know then think I am crazy for going to different ER. On top of that I really don't have a Doc. yet that knows how to treat this.

[Guest Finrussak]

Hearing your desperation and having been there ( quickly dismissed as panic and/or psych) I felt compelled to say that I know quite a few ( on and off this site) that go to Cleveland Clinic and that I believe Dr Grubb was at one time on their staff so Im guessing that they may know enough to help you!!!

While its normal to be upset and even feel hopeless at times, dont give up. And dont beat yourself up over your reactions at the ER!!! We all feel at the end of our ropes some days...try to reach out for support from family and/or friends and please try to get an appt with a knowledgeable physician.

Finette

[dizzygirl]

Belinda..

I just wanted to send some BIG HUGS yourway.. and that I hope that you are feeling better and that you can get to the root fo your breathing problems... and that you get relief from that...

also..screw them docs.. I'm sorry that they autommatically think that b/c you are crying and upset that you need a psych eval..!!! OHHHHH that makes me so angry!!

I have been there done that.. and ahve been sent to a locked psych unit.. when I was suppose to be having a emergency neuro consult!!.. I'll leave that story for an other day!!

please dont beat your self up about htings... I wish that theyre were a way for people who do not live wit an invisible chronic illness to walk in our shoes for just a hour.. then they wouldnt be so judgemental and quick to blame you or your mental health!!

please take care belinda!

dizz

[Aprilmarie52]

(((((((((((((((((((((HUGS)))))))))))))))))))))))))). Hope you feel better soon.

[Ernie]

Hi,

I am sorry you have been misdiagnosed. I know exactly what it is.

Since I have gone to NIH I have much less problems with ERs because I now have medical proofs that I am physically sick. I still need to bring my medical file with me and show them the most important documents to be cfredible.

I can't wait for the day when we will be believed by word of mouth.

[Guest Belinda]

Thank you and hugs back to all of you...I've decided if things get any worse I will probrably just drive myself to Cleve. Clinic or University. Or maybe even call and see what they say.

I know The E>R> Doc. sent some weird tests out where they took a HUGE VIAL (4) of blood mixed with something < I asked the nurse and girl what it was but they didn't tell me. Maybe Autoimmune disorder

tests it takes a couple of days for those so II am not sure why he did it, maybe he suspected something

it would just be nice to know if there is something else going on other than POTS.

I am sorry to have been so negative, but you know I feel very frustrated..I don't have any family around which would make this easier right now.

[d4g7]

I have a letter from my neurologist that states that I have POTS and describes exactly what it is, and what the common symptoms are.

Whenever I have to go to the ER, usually for tachy at around 180bpm, I take this letter with me - I seem to get better treatment now that I have the letter stating that there is something organically wrong, and that it isn't psychological.

Before that, they used to get a psych to see me, and give me some Valium and an extra dose of Beta Blockers.

Now at least they can put me on a drip, and watch my hr and bp...

Maybe try and get a letter like that, that you can take with you on any such trips.

[mom4cem]

So sorry you are feeling bad and worse, being treated like you are just an overly anxious female

I hope you are feeling better now. Have you considered making the trip to CC to see one of the Dr.s there to get dx and a treatment plan?

[Guest Belinda]

Well I am going to try and get into someone either at the clinic or university as soon as possible.

They definitley know I have some autonomic dx because of my bp reading and heart rate problems,

also gastroparesis and reflux. Not to mention chest pain ands.o.b.

I am going to get test results hopefully Mon. and at least get into see cardio. doc. after.

I am not going to give up til I have relief and pinpointed DX.

I saw PCP, this a.m. she is like ????????

I asked her about breathing problems she said it's all tied in and I shouldn't worry about it.

But of course they were swamped and it's a SAT.

If noone does anything by midweek or I am feeling worse I am just going to go downtown to University or the CLev.Clinic

If they don't start fixing problems-I will end up in Psych. ward-Ya know.

She mentioned something about Cymbalta to at least help with the pain and S>OB>

Has anyone tried this drug?

I don't know I am so flabbergasted!! I need miracles anyone got any thier not using-HAHA!

You guys are very supportive I appreciate your thoughts! Belinda

[DSM3KIDZ]

I just read your post and I hope you get answers soon. I don't know what E.R. doctors expect us to do, come in jump roping and telling jokes? Being upset is completely normal under the circumstances. I can't name 1 person that is excited about being sick or losing control of their health.

For me personally the doctors and e.r. people are the ones that give me the anxiety. Their should be a pill for arrogant doctor disorder.

Sorry but this subject gets to me. I hope you find better care at another facility

Good Luck

Dayna

[persephone]

I'd agree with the earlier folks who said take letters with you. When I'm bad with POTS, I carry them in my handbag as I never know when some bright spark might ignore my wishes and get me carted off in an ambulance, or when I might just come round in the E.R , or A&E as we call it over here.

Before I had the name for this condition, the drill would be: they take your pulse and blood pressure lying down. REasonably ok then (postural, see!) and then they would give you "the look" and say "well, it seems that you're FINE now." Then it would be- "What do you do, do you work?" I would say "Yes, I'm doing a degree." And they'd then say "AH! Stress! You're under pressure with your studies! That's what's the matter with you!"

It didn't matter how many times I told them I LOVED my subject, lived and breathes it and wanted to do a doctorate in it because it feeds my mind and is my absolute passion- they would say "No, you're in denial about panic attacks related to stress."

The number of times I used to get that response was just NOT funny.

Now I have a letter from a leading autonomic specialist, and I hasten to add, tilt table scans which show asystolic blood pressure- so when I get admitted anywhere now- if I ever come to in A&E or an ambulance because some bright spark has ignored my request, and got me carted off when I've passed out (luckily this hasn't happened in Oxford yet, but it did several times in St Andrews)...then they can't really argue with a Professor of Neurovascular Medicine.

I agree with Ernie- it will be a wonderful day when people with invisible conditions are believed.

[dizzygirl]

Belinda--i have been thinking of yout oday and just wanted to pop in and see how you are doing....

I read in your post that you "are sorry about being so negative..."

BELINDA!!! dear you are not being negative.. you were treated badly and dismissed by the medically profession.. and you were upset about not feeling well.. that is not being negative!! its being Human!!

Shoot.. I'd be concerned if you ddint show some kind of emotion!

Besides.. this is an NO APOLOGY NECESSARY ZONE!! as i seem to recall one of our felllow potsy pals saying!!

anywasy i hope that you can get some answers and can get in to cleveland to be seen.. good luck to you!!

HUG

Linda

[Guest Belinda]

Thank you..I am just trying to deal with this.

I appreciate everyones advice and on Mon. will be calling to see if my test results are in and figuring out what to do next. Hugs to all of you. I still feel awful but what am I going to do. Belinda

[Eli6596]

Belinda,

I want to say something to make you feel better. I can feel your anguish from your posts. I think it is so hard not having a diagnosis yet. I know how hard it is to be patient with testing and arriving at the diagnosis. Try to take one day at a time. Letting others get you upset will just worsen your health.

Persephone, I smiled in recognition when you wrote about the "stress" explanation. Even though I am a physician myself, I got the "It is just stress speech" too! Urghhhhhhh. In the mid 1990's, few people, including myself had even heard of POTS. Finally, I saw a cardiologist who knew what was wrong with me. It was SUCH a relief to have a diagnosis, because then I felt power to do something about it. I pray that you are so empowered.

When a physician does not know the cause for ailments that are sometimes linked to stresss, he or she finds it easier to just blame those ailments on stress, anxiety, depression, etc, rather than say "I do not know". The dangerous situation occurs when a physician assumes that a psychiatrically ill patient cannot have concurrent REAL physical illness too. In fact, as we all know, physical illness makes us feel crappy emotionally. When we feel weak emotionally, this then can worsen the underlying physical illness. It is a vicious cycle.

Just FYI: when a patient makes a comment about hurting themselves (jumping off a bridge), the physician is bound by LAW to refer the patient immediately to a pyschiatrist. The requirement for involuntary committment is that the patient poses a risk to herself/himself or others. Making it clear that you would not REALLY hurt yourself (I am assuming that you would not), will avoid such a bad situation.

Cymbalta is a new antidepressant, similar to effexor. Effexor has been reported as helpful for some POTS patients, although not me.

I wish you all the best. I hope that your tests and the right doctor lead you to the correct diagnosis soon.

Karyn

[Sunfish]

belinda-

i just wanted to send some (((hugs))) your way. i know how tough it can be and ERs generally aren't grand experiences for folks. and it varies greatly on the doc, etc. even with documented paperwork, records, etc. i was sent to the ER last monday for fluids by my primary & neuro b/c my BP was super low & i won't get into all the craziness that occurred but it was NOT a pleasant experience. and that was with my being at the ER in the same hospital as both the docs who sent me. i have established diagnoses and documentation so didn't get pinned as having psych issues but have "been there, done that" in the past. and even with the solid physical stuff i was blown off to a degree by being told to see my regular docs. uh, yeah...obviously...they sent me to the ER to begin with as my BP was hitting record lows. gggggrrrrrrrr.

i'm not trying to discourage you from seeking out other places of care but know that even if a hospital has great knowledge of dysautonomia in certain docs, departments, etc that does not necessarily mean that it translates to the ER or that the folks there will even be willing to seek out those who do have the info.

unfortunately being alone in any medical setting - not having someone there to advocate for you - can be a disadvantage too. and i think this is compounded in an ER setting. i read that you're new to the area & here on your own & i can totally relate in that regard. i've always been miss independent but with medical/health issues it is SO tough. i just moved to cleveland in august & my closest family is 2 hours away so on a day to day basis i'm on my own too. fyi, i'm going to be trying to get a cleveland area meeting/support group together...probably after the holidays....so hopefully that will be an option for you.

hang in there,

melissa

p.s. karyn , thanks for posting re: the legal obligation of a health professional if certain things are said...i was going to do the same thing. it's not a rationalization for physical issues being ignored but it IS the reason why a psych consult is brought in in some situations.