Don't go to the ER.

[Guest]

The events I will tell you about occurred only 3 weeks ago. Suddenly and without warning I fell into a deep and dangerous depression. My mother was frightened at my state so she called the police and they found me huddled in a corner crying, not good.

 

I explained to them that it is physical and I do not want to see another psychiatrist, I already see the best one in the state of florida. I showed them all my medical records. I showed them everything I was diagnosed with. I told the cops that I spend almost all day lying in bed with unspeakable and death-like fatigue and on top of it I have OCD. I AM DEPRESSED B/C I AM MISERABLE AND SICK.

 

Once they hear "depression" and "ocd". I am baker acted but they promise to take me to the ER to get "fresh new eyes to look at my medical problems" b/c the cop is SOOO understanding since he has chrohn's. Insert "eye roll".

 

I was taken to the ER and locked in a room for 8 hours, nobody came to bring me any food and water even though I told them I have TERRIBLE dysautonomia (hyperadrenergic pots) and need hydration as well as medication in the afternoon for tachycardia. They didn't bring me anything and it turns out they just forgot about me. None of the douchey doctors had heard of PANDAS. I told them I have movement disorder stuff.

 

Fast forward to 10 pm, I have never felt so fatigued in all MY LIFE. A security guard takes me to the psych ward. I then have to do a 2 hour interview intake with a psych nurse, who in his defense was very caring and compassionate. By this point, I had periods where I thought I would pass out, I would drift in and out when finally in my bed.

 

The psychiatrist who came in was my first doctor ever, THANK GOD, she had treated me for 4 years starting at age 18. She knew all the physical stuff and once she looked at my chart and saw that I'd tried almost every psychotropic medication, she let me go home. Sadly, they had NO recommendations for my depression which has not changed since that week.

 

I share this experience to tell you don't go to the ER. The male psych nurse told me that right when they hear: "depression" "ocd" "insomnia" - to the psych ward you will be shipped. The ER doctors are in residency, arrogant, and don't know anything about complexity or rarity. The ER is way too busy and I was overlooked.

 

This would be very detrimental to my health. That week I developed c-diff, worsening of tonsil and throat infection, UTI, and vag. yeast infection. I did not have any infections at the time I went into the hospital. I am still taking abx weeks later to treat them. I think the trip was far too hard on my body. I expected to be seen by a neurologist, someone, anyone, who was willing to help.

 

AVOID THE ER.

[Guest]

P.S.

 

What am I supposed to do about this depression? My psychiatrist acts stumped. I recently tried a new anti-psychotic with depression helping qualities but I could not sleep on it. I have tried all ssri's and tricyclics, none helped the ocd or depression. Zoloft actually seems to make me more depressed. I had slight response to an MAOI called "emsam" with few side effects b/c it is a patch, so I am inquiring about it again; problem is, when I go for my second investigatory opinion (looking at mayo, rochester - nyu - and duke) they may not be able to treat me if I'm on an maoi.

[PowPow]

If the maoi helps, can you do it and then "if" they need you off it, you can go off for a little bit and then do what they need. That whole MAO- inhibitor thing is terrible , we had to do it for six weeks here for an antibiotic. But if it helps?

i pm'd you, too!

[Guest]

If the maoi helps, can you do it and then "if" they need you off it, you can go off for a little bit and then do what they need. That whole MAO- inhibitor thing is terrible , we had to do it for six weeks here for an antibiotic. But if it helps?

i pm'd you, too!

Yea I think it's important to help the depression NOW. And if they need me to get off in the future, I could.

They really work, wish they didn't conflict with so many things.

[beeskneesmommy]

I am so, so sorry.

[LaurenK]

I'm sorry you had such a bad experience. I hope Dr. N really helps you.

[searching_for_help]

Ophelia, could you post your 23andme results here? There are some here that are knowledgeable and can guide you. I keep reading that with MTHFR mutations, L-methylfolate can make a world of difference in depression, and many other problems. I'm betting you have some mutations that supplementation might help.

[qannie47]

Just said a prayer for you....depression is horrible...have had some of that in my past...so I know....I am so sorry....be kind to yourself. Do something that brings you joy, write a song...surround yourself with those who can bring you compassion and strength.

[PIK]

I wholeheartedly agree. I went to the ER and though I was a bit delusional, I was TELLING them I had glomerulanephritis and thought I had had PANDAS, and they just shipped me to the psych ward. I was BEGGING the ER doctor to run tests on me because I was feeling SOOOOO ill.

[tpotter]

Ophelia, are you still going to see Dr. N? All those psych meds are probably making you worse.

 

Also, I really recommend to anyone talking to standard docs anywhere, they you all start talking about post-infectious or autoimmune encephalitis instead of PANDAS/PANS. They don't understand PANDAS/PANS, and they don't understand what infection, et al can do to us and our kids. So, speak in their terms. They do understand post-infectious and autoimmune encephalitis. In fact, I've started listing post-infectious encephalitis (dx given by Dr. L. prior to doing IVIG and PEX) as my childrens' dx rather than PANS, and doctors have been intrigued to the point they ask: "what infection?" I then explain about strep, lyme, bartonella, etc, but also explain how once the immune system is so affected, my kids are more susceptible to anything, so encephalitis/encephalopathy could be triggered by many things, and that's why the "behaviors" are there. Had no problem at all since I started doing that.

 

PIK...did you ever get blood tests?

[SurfMom]

I am in complete agreement with Tpotter about talking the language that doctors speak. If you use the general term autoimmune encephalitis, this is a meaningful to every doctor with a protocol of treatments that most are versed in right now.

 

I am so sorry you are having to wrestle depression. Please try to eat well and don't be too hard on yourself. Just the fact that you are reaching out and determined not to be ignored when you KNOW there is something going on is a very healthy sign!

 

Fight your fight, be proud of yourself. You are stronger than you think you are. Big hug!

[Guest]

Well I have to say that the ER doctors would not know what "autoimmune encephalitis" is and as soon as they read about it and see "psychosis" and etc., they would still have sent me to the psych. ward. They didn't know what "myalgic encephalomyelitis" was. They DIDN'T EVEN KNOW WHAT "postural orthostatic tachycardia syndrome" was and that is "their" language. Any time someone comes in with horrible dysautonomia they should be put on saline iv right away, b/c it is the most helpful treatment........

 

Furthermore, I explained that if they sent me there I would get even more sick b/c I have horrible "post exertional malaise". Like I said, it wasn't anything I did wrong, I had my records in hand, they admittedly forgot about me in that room and like the psych nurse who was my age and very open with me said, "as soon as they hear: depression, ocd, insomnia, they will send you here."

 

That advice is good for doctors like Najjar yes, but in the ER, unless you are bleeding to death, you will be pushed aside. My mom is a nurse and has worked there so she can confirm this first hand.

 

When I got the energy to get up and signal the security guard I heard him talking to the nurse and she said: "Oh we thought we gave you the papers 4 hours ago, she was supposed to go there 4 hours ago. Oops."

 

If the residents there don't know what dysautonomia is, they aren't going to know what anything else is. Especially since one of them was internal medicine, he should have known. Bottom line, the 3 residents were complete douche bags and didn't care.

 

Re: Najjar, I have not heard back from them. I also haven't heard from Mayo's neuro-immunology department. I hate waiting because I continue to get sicker.

The only doctor willing to help is my psychiatrist so he's trying to "ease the symptoms" if you will.

 

 

Thanks to everyone else for the prayers, hugs, encouragement, it is GREATLY appreciated. I have essentially been a prisoner in my house for the past 5 or 6 years so hugs do not come very often........

 

P.S. I think the problem I have is that I bottle up everything inside. I want to appear brave, I don't want to worry or consume my mother, and I still can't be honest with my doctors about how I truly feel; there is still a feeling of embarrassment when it comes to my circumstances, especially because I'm on disability. I want to remain kind and respectful to everyone, even if I am in public. So eventually all this pinned up emotion bursts out of me, thus the depression and crying spells.

[Guest]

@powpow and @searching for help - thank-you so much for your help and continued support.

[cyberdog]

I'm really sorry Ophelia22. That sounds awful; I had a similar experience where the police showed up here unexpectedly and it was pretty traumatic.

I thought this was really insightful:

 

 

 

 

P.S. I think the problem I have is that I bottle up everything inside. I want to appear brave, I don't want to worry or consume my mother, and I still can't be honest with my doctors about how I truly feel; there is still a feeling of embarrassment when it comes to my circumstances, especially because I'm on disability. I want to remain kind and respectful to everyone, even if I am in public. So eventually all this pinned up emotion bursts out of me, thus the depression and crying spells.

 

I can relate .. I often cover up with doctors (to my own detriment) and blamed myself for being vain, but I realize a lot of it centers around dignity and trying to create a positive impression, which is just social instinct.