Does anyone else out there have a LO with LBD who is always scared and panicking and have full blown panic attacks? My dad seems to be getting worse and worse every day. It used to just be sundowner hours but has lately been as soon as he wakes up - he is running away down the driveway with no shoes on, banging on the neighbors windows screaming for help. I bring him back in the house with me and lock the door and he has a full blown attack that the door is locked. He has been crying and on and on - it seems excessive and no way for anyone to live. I don't know what to do! He takes Seroquel all day and night and Ativan for emergencies but we seem to be using it more and more. He doesn't realize that he is home and OKAY. I don't know how to help him calm down ... any suggestions?

DawmmaT. Just our experience, Ativan made Frank's mental state ten times worse. His hallucinations, delusions and paranoia were horrible and non-stop, it happened 3 times so we're sure it was the ativan. Good Luck,

I just posted the following on the spouse-caregiver forum. I might as well post it here, too. It's not just evenings, either, but by evening he has really escalated. His muscles are tense and you can tell he's in a panic mode:

Some evenings, when he is going through his usual agitation, anxiety routine, my husband wants to call the police. When I ask him why, he can't really explain but it's clear he doesn't know where he is or who I am, so I suppose he's just bewildered and frightened. This subsides around 9PM just before I start getting him ready for bed. I used to phone family members and have him talk to them but I think they are getting a little tired of these frequent phone calls and trying to reassure someone who is so delusional. Does this ever happen to you? If so, what do you do??

Maybe someone can help us both! He can't take Seroquel and I'm afraid to try anything else, after the horrible reactions he has.--Pat

DawnnaT

My hubby couldn't tolerate Ativan either. Made him really antsy. We switched to Klonopin (Clonazepam) and it's keeping him calmer. He also takes 100 mg seroquel at bedtime.

Of course they all react differently to drugs.

Karen

You might speak with the treating neurologist about the following:
* referral to a geriatric psychiatrist
* eliminating Ativan
* increasing Seroquel
* trying an anti-depressant that also has anti-anxiety properties (eg, Paxil or Lexapro)

If your father is not on an AChEI (Aricept, Exelon, or Razadyne), then I'd find a new neurologist and get him on this sort of med as it might help with the behavioral problems as well.

Pat,
I sent you a private message.
Gerry

Pat, I sent another pm and that was the 4th, I might be doing something wrong????

Gerry

I finally received two of them and have answered. Thank you for your perseverance!

My mother has felt tremendous anxiety, panic, and fear for almost three years. Her condition is a combination of DLB and major depression, which she has had a number of times earlier in her life. I am convinced it is the major depression that makes her life intolerable more so even than the DLB.

Her litany is "Please god, help me... why do I suffer, I don't want to suffer... what did I do to deserve this? ..... I scared, I terrified ... I want to die.... please make me me again".... and on and on. The only time she feels somewhat better are those times when she is given enough ativan and/or trazodone to more or less rock her out. But nothing lasts and the panic returns. She is unable to read, watch TV, listen to music, do anything. Sometimes we take rides in the car.

Initially she was treated with electroshock therapy with no success and a number of other anti-depressants were tried prior to trazodone. Nothing has dented the tremendous anxiety. It seems to be that the minority of patients are like this but apparently those that are are doomed to be this way. I had written about this before about 9 months ago or so, and no one really had any fresh ideas.

Any thoughts? The horror just goes on....

Has she tried Seroquel?

they just reduced my dad's Ativan and increased his Zoloft, and he is much more calm and more like his former personality. I have not seen him myself but the Hospice nurse says he is smiling, laughing and telling jokes, something he hasn't done in many, many months.
I had to fight for med changes for months, but it sounds like they've found a combination that is helping him. I hope you continue to fight for your LO, and "fight" is unfortunately what you might have to do. It took 5 months for the primary care to listen, and firing the psych., to my pleas for help before we got some action. Lynn

Lynn, you are so right! 'Fight' is the correct word. This whole process is not only a battle against Lewy but a battle with the medical community. And it seems to me that the tendency is to lay on more and more medications without really assessing the patient's response to them.

You're right Pat - in my dad's case the psych. put him on at least 3 new drugs all at the same time while I was away in Feb. No one ever did anything about his increased agitation after the addition of these meds all at the same time. Despite my best efforts to keep communications open with all his drs. and the CNP, none of them has EVER advised, asked, or informed me about add'l meds added. They do not respect the POA at all, and frankly, don't give a darn about any family communications, input, questions, etc. We are ignored, totally. Only when I countered the CNPs threat to sue us did she agree that a change might be in my dad's best interest. And now, he is better. What more need I say? It was a fight, and hopefully we won't have to go down this road again.
Being forced to fight the med. community for your LO is almost worse than trying to deal with the disease itself. Good luck to everyone out there today! Lynn

Oh, Lynn.

When you put it like that, I'm so glad that my sister B is Mom's medical representative and I only have POA for business and general decisions. B is a real fighter and has already had the doctor that gave my Mom an anti-psychotic (before the LBD diagnosis) removed from Mom's case! I'm such a wimp I don't know if I could have done it. I have to let the mad build up in me first.

One of our sisters said to me that you can't treat medical staff like that, to which I asked why the H--- not? Especially in this situation, we have no choice but to fight.

I could hug you, I'm so proud of you! I know it wasn't easy and the political risks were high when replacing medical staff. But you did it and things turned out better.

You go girl!

Kate

Oops. I forgot.

Mom doesn't really have panic attacks that I know of. But the paranoia is there. She's had me check the locks at least twice for a couple of years now. And, lately, she's seeing someone at the front door.

But then again, she rarely talks now, the words are so hard to say for her. So I don't really know how scared she is. Next lucid moment, I'll have to ask a couple of questions.

Kate