Need counsel

[siskiyousis]

siskiyousis said:

This is not caused by lupus or she has very abnormal kind of lupus which is possible but i yet to see anyone ever act this way due to just lupus. But my own experience might be helpful...and i can hear your sincere concern she might harm herself.

First, most people or patients know...as you know, that if they mention they feel suicidal that as her counselor you must address it. Most likely admit her, so people never actually will say they have suicidal thoughts unless they are completely at the edge. To be there is one of the worst feelings. Unimaginable to most unless you been there. So if you believe she is there than you must do something now ..it cannot wait.

I ended up acting almost identical to her for various reasons. Emotional trauma had recently happen to me and i had not gone to a counselor i really trusted, so no 'real' work was done. I was over drugged and that created out burst just like you say. Anytime any family,friend even doctors would express worry it, I got angry and now realized was in denial. I discovered a very useful tool that if you get very angry if a friend or family etc suggest you are over drugged than odds are you are. If you are upset emotionally than being a zombie(from over drugged) is much better than to feel the horrible pain of the trauma. I also than had severe reaction to a antidepressant my doctor had me switch since others did nothing. Even the ER Doctors did not have clue what was going on with me. I am sure they saw this zombie woman on way too many drugs and who kept saying that my brain felt extremely not right...like was closing down or i get tunnel vision which over doing pain killers and other drugs can also cause. Plus, we did not have Psychiatrist Dr here in this county so they just wrote me off as nuts i think. So next day I called my old counselor who i seen off and on for 20 years most of it over 15 yrs ago. I trusted this woman with my life...i saw at least 5-7 other counselor before i found her and she saw right through my mask .

I tried to drive down to see her but tunnel vision and crazy feelings would come and go so she drove up to me. One look and she realized I was over drugged or some kind of drug problem with my medication because if it had been emotional i tell her. She talked me into admitting myself into mental dept of hospital in her area...that she knew was somewhat decent. As you might know but in case others see this in themselves or others...county mental wards are scary and if you have had somewhat 'normal' life ...no extreme violence or abuse in your family they will be very upsetting. Try to do some homework before you either admit yourself or have an loved one admitted to fine nicest one your insurance will take.

They figured out in less day that it was reaction to the antidepressant since they seen it before. So i was only there few days. Than i went to pain specialist on my counselor recommendation and he was the life saver really. First visit was over 2 hours. He said that only way he will work with me was that he need to work with all my doctors....he sent a letter or email about my treatments and what was new or different and he expected my other Doctors to do same plus i got a copy as well. so i felt included and treated with respect as part of decision making of my treatment plan. I was use to this since my Kaiser doctors had always done this. It took me over a year to get off all the drugs and back on only ones i really needed. I went from over 10 down to 4. He also made you take class about pain and how it works plus how pain drugs work. It was really informative. Also, no i do not nor every had addiction problems with pain pills or any kind of drug.

I really recommend that you try and get her doctors to work as team asap! She will accept this more likely because she is being treated as real partner in her treatment and it shows her respect since she will get a copy of their letters and be part of the team as to decision making.

Also...this is part, that i do not mean to offend you. I know you wrote because you sincerely are concerned about this friend. If i read a post that sounded very much or exactly like my counselor discussing things about my life well it would be huge violation of trust. It appears that you have not made any headway with her as client. The best thing for her might be to help her find some one that she can speak with and motivates her to do the real work. It be nice to have type of therapist that knows about drugs and how they can affect us emotionally plus what are good combinations and which are not. Or even what is too many. I hope you do not take this as being criticism it is meant not to be. I too, would like this woman to get help she needs. It would be grand if in a year or less she enjoys life again and i am positive that is what you want for her as well and why your wrote. I hope my life's experience in being very much similiar as you describe can help you to help her with all my heart.

[Amaryllis]

PLEASE READ! SHE IS IN A MEDICAL EMERGENCY STATE!

I know it’s a common thing to try to blame the meds, but this SOUNDS JUST LIKE CNS LUPUS (lupus attacking the central nervous system, which is very serious!) She should go to the hospital and try to find a specialist who is aware of this aspect of lupus. It’s not even rare, but often ignored by a medical community that still stigmatizes and ignores problems of “mental” origin!

CNS Lupus, also called NeuroPsychiatric Lupus, is caused by either direct inflammation of brain tissue or by small strokes that cut off areas from oxygen temporarily. It can cause psychosis, cognitive/reasoning difficulty, personality changes, seizures, and full-on strokes. Any signs of stroke should be an immediate 911 call! Also, the “falling asleep” part may actually be the seizures, which often are in more limited brain areas and don’t actually cause the convulsions most people think of as a seizure!

I have experienced all of the things you are describing about her, all before I knew I had lupus, and now that I am diagnosed, we are digging through the past history and doing tests (brain MRI and a spinal tap) to check for brain involvement. Is psych meds (anti-depressants, for example) aren’t helping, that ESPECIALLY points to an underlying medical cause rather than psychiatric trouble on its own! When I was literally out of my mind and scared silly with all those symptoms, I was actually begging to go to the hospital, but my well-meaning family convinced me out of it because they feared I would spend Christmas in a psych ward and would be better off resting at home. I bet that small Michigan town’s hospital wouldn’t have figured it out then anyway, but it’s a shame, because we expect to maybe find evidence of permanent brain damage from it! I am only 25 years old, and luck to be looking for it now… The more damage that accumulates over time, he more likely it is to lead to early or severe dementia later on (which my grandmother died of at age 74 right in the middle of my terrifying flare-up… I think she was undiagnosed for lupus also, but my grandfather declined autopsy so we’ll never know…) Maybe it will HELP HER TRUST YOU to say how serious you agree her lupus is (I think she’s absolutely right the lupus is causing this, and the doctors may be dismissive… Stay strong for her!) and you can get her interested in going to the hospital. At the hospital she will NEED AN ADVOCATE to explain her symptoms (which she may not be fully aware of) and especially explain the drastic changes you have mentioned, since they won’t know what she’s typically like. AND her husband will need to make informed medical decisions, because she is probably not competent to make her own medical decisions in this state! But include her as much as possible! The only thing they tried for me that did help was Zyprexa, a newer, very expensive anti-psychotic that is approved to treat serious and difficult-to-treat depression as well as bipolar mood problems (I was previously diagnosed with plain old bipolar before lupus, but probably it’s bipolar moods caused by lupus attacking my mood control centers, because it’s very atypical for regular bipolar and comes on only with all my other lupus symptoms very active.)

I am so fortunate to have a background in neuroscience and health and through my own search for answers I found a local expert on this frightening, extremely difficult aspect of lupus here in the San Francisco Bay Area, but sadly there don’t seen to be many doctors who know anything about diagnosing or managing this! The doctor I’m seeing has written articles, mostly directed at other doctors to help them look out for this and help their patients… Please follow these links and print them out for your local doctors!

Diagnosis/management advice (to be used by a medical professional!):
"Managing Neuropsychiatric Lupus: Top Ten Clinical Pearls"
By C. Michael Neuwelt (that’s the expert rheumatologist)
and Robyn G. Young (a neurologist he works with I his research)

http://www.musculoskeletalnetwork.com/display/article/1145622/1396901

They can look up other articles by those authors if desired, and this Cleveland Clinic article on lupus as a whole has a very informative section on it (scroll down to Neuropsychiatric, the ninth heading down under the “Clinical Presentation” section, just after a long section on gastrointestinal.)

http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/rheumatology/systemic-lupus-erythematosus/#bib28

PLEASE take action to help her feel calm, validated, grounded, and empowered to fight this. If she wants to blame the lupus (which I think is right!) jump on board and get her into medical care ASAP! I know it is SO hard to understand what’s in someone’s mind in such a deranged state, but you should know it can get better (I was right where she is just 3 years ago, and listen to me now even without the proper knowledge to treat it back then!) The same steroids, chemotherapy, and biologic immune-suppressants are used to calm these flares. An MRI and spinal tap can check what’s actually happening and give you options to get it under control, and I recommend asking about antipsychotics and/or anxiolytics in the mean time help her get through and calm down, which the docs will probably push for also! I’m just encouraging you not to be afraid of over-drugging her with these scary-named meds… She will really appreciate having a tiny bit more peace in her mind! They are NOT very good drugs to be on long term, but probably would only be needed to get her back to at least closer to her normal self and reasonable thinking patterns until you can stop the flare!

Please feel free to bring in my description here to share with the doctors you consult! I do not say any of this to substitute for their medical diagnosis, but as a patient who has been through this, barely survived it, and in fact gave up my plans of going to medical school myself because of coming to terms with this debilitating disease. I can only hope my knowledge and experience can help others stand up for the care they need in the face of such frightening circumstances!

My prayers are with all of you (and I’m not so convinced of a god even… There are just times you gotta pray no matter what the truth is!)

[Amaryllis]

Ok, and a follow up to my advice for anti-psychotics above (but still READ THE WHOLE THING!) I should mention I got noticeable, to to point of feeling life-saving, relief within 2 or three days of taking Zyprexa. It breaks the bank, buys it might get things under control within a week, when you should have MRI & (some) spinal tap results to base an anti-inflammatory regimen on. Anxiolytics (just means anxiety meds, most likely benzodiazepines that act quickly) may be enough after that first critical week.

Be careful that they may NOT want to give her benzodiazepines of you express worry about a drug addiction, because those are habit-forming also (but not quickly, over time, and longer-acting ones that are more sedating have less abuse potential.) I do NOT think she has an addiction problem, I think she is paranoid, possibly psychotic, and subject to intense mood swings (which all happen to drug abusers also… But like heavy cocaine aspammers users, not people taking pharmaceutical doses of pain meds!) What they are calling my NEARLY IDENTICAL episode in hindsight is an “acute confusional state”, which is also known as delerium and often made worse by the types of meds she’s on, so it may well be that they’ll taper her off of some. But quitting any cold-turkey, especially the anti-depressants, will make things SO much worse and give her unbearable pain (antidepressant withdrawal can cause pain that’s as bad as narcotic withdrawal, and both at the same time might be enough to send her into shock. Not kidding.)

Again, she should be in the hospital, so they shouldn’t feel worried about her taking too much or too little of anything, and they should be checking like mad about interactions. If you have the option of a major medical center or university hospital, go for that. If not, geriatric doctors are used to dealing with these complex med wars and delirium. But make sure they don’t ONLY treat it as psychiatric, because that may leave her in it longer than necessary (I slid downhill like she is for two or three mobths, then hit the bottom and stayed like that for nearly 6 WEEKS, acutely confused/borderline psychotic and afraid each time I slumped into involuntary “sleep” that I wouldn’t wake up, or that I might try to kill myself against my will even though I didn’t want to and was scared as hell about it happening… But my will was robbed from me.) On the same token, make sure to get her psychiatric relief so she can get through. Benzodiazepines also stop seizures in their tracks…

In helping advocate, put a lot of emphasis on the behavioral changes, personality changes and especially mental status (consciousness/awareness) changes and comment on the timing and circumstances of them. By all means give them the full list of meds, including timeline of dose changes if you can, plus whether she is taking them all on schedule, but PLEASE do not DO NOT make it about her being drug-seeking or addicted or just overly emotional. It’s chilling, but hospitals LOVE to dismiss people on drug-addict or unfounded-hysteria grounds if you don’t medicalize the sh** out of your case.

Don’t share this post with them, it is FYI in case you have to go to battle for her rights and adequate care. Contact me if you need any more advice, support or understanding ears. I am unemployed and pretty available, at least to write but also to call if you’d like. I have tons of nationwide minutes (but if you’re in the UK I also have Skype…) This is such a hard thing that almost nobody understands unless they’ve been there, and not very many who have been bounce back to strength and clear understanding. I still have my really bad weeks, but at least I have some meds to help and faith to wait it out (in myself and my friends/family if not a god, but I sure don’t dismiss it after what I was carried through three years ago!)

You are not alone, I hope you are less in the dark, and happy thanksgiving to you. Your friend/client is SO blessed to have you looking out for her so carefully and caringly, and after it’s resolved she will have the happiest thanksgiving ever, even of its late.

[Amaryllis]

Last note, sorry for spelling errors and I hope it won’t make your skeptical doctors doubt the validity of what I’m urging… I literally wrote all that as fast as I could on my iPhone because it’s so important. Auto-correct sometimes subs in a whole random word (as if it has iTourrette’s…) so the thing that says “…heavy cocaine aspammers…” was supposed to read “cocaine and meth users” that would have mood swings this bad. Or maybe someone abruptly withdrawn from pain meds and antidepressants all at once, and if she’s missing meds that would be great to know! When I was in that state I had no clue about meds, no motivation to eat, no ability to feed myself, no sense of the passage of time. My head was spinning with thoughts and fears, but my family saw blank stares and sometimes angry or psychotic outbursts. It didn’t help that my mom criticizes and yells at me a lot because she gets this way too.

Give her so much love and know she’ll come back, faster than you might think. And maybe send the kids to stay somewhere… My 21-year-old sister was too traumatized by me in that state to even speak to me for a few weeks, and it took till last summer to have a conversation where I could explain what was happening was totally beyond my choice or control and not meant to hurt anyone, and she finally warned up to “forgiving” me for it. It was hard for her to believe that because of the way i would “snap” back in and out of it. I usually behaved (and tried my darndest) in public too, but in the worst of it that started failing too and i was humiliated to be caught in public environments. Hospital is the best place to be, and before it gets that bad is much better! This is so hard on family, especially any dependents or anyone not old enough to understand took my sister till 24 to be ready!) Maybe the hospital will assign a social worker as well; make sure to ask and have them check for coverage of it!

And in case any doctors you meet do want to get consultation… Dr. Neuwelt’s office number is (510) ■■■■■■■■. He’s really busy and hard to reach, but if a doctor/hospital calls they’ll connect them through at least to a voicemail that he’ll get. Don’t have them drop my name, though, he might be annoyed that I made his workday longer Or he might be overjoyed to help a case go right I don’t know him that well yet, but at my first appointment he was passionate about wanting to figure it out and the first doctor to really hear me about this!

[Amaryllis]

I know I said last note, but I have more to say after reading the other replies, on the contribution of meds. When I was sliding downhill like this, I was on ZERO medications (years prior to lupus, and though I had pain, it wasn’t as bad and I usually too max 2 ibuprofen and got relief.) They then started me on meds for bipolar in the middle of it and then it shot me through the roof with complications (and I think a significant seizure on a flight, but again without convulsions so the crew didn’t comment.) Psychotropic meds probably make it worse, but there is very likely an underlying cause to get her entire personality changed, and MENTAL STATUS changes are a big deal with your brain essentially shutting down, not just the type of moodiness side effects of drugs. Timeline of drug starts and dosages would be so helpful to the medical team, and if you can keep her in the hospital long enough to get RATIONAL again, she won’t hate you for it. It might take involuntary commitment to keep her there, but Zyprexa for a week or two should have here able to think straight enough to be glad she’s in there getting help.

She naturally has had bad experiences with the doctors being in a rush and not addressing her needs fully, so if it’s different this time she may feel better about being there. Nobody is going to want to handle this outpatient, and it definitely shouldn’t go anywhere near a therapist until her mental status and neurological function is examined and resolved! I was seeing a therapist when I first hot worried about myself, and it made everything slide downhill even faster, and I just ended up paranoid he was harming me somehow. He had no clue how warped my mind was, because I’m quite articulate until I’m all-but-unconscious. I got to points where I couldn’t spit out a coherent sentence, to the point that I could only form a few softly mumbled words, and that was all BEFORE and drugs on board at all! Blaming the drugs is a way to avoid the underlying issues, and determining those will help say what drugs are important and useful. MRI & spinal tap are both expensive. But if you fuss over the MENTAL STATUS part they will likely do them.

Good luck!!