Dear Friends, sorry I have been gone so long. Amazing how time takes so much from us. I will try to be more active here again. I have an issue that is driving me crazy and I guess I am going through major sundowning. Starting mid afternoon to evening as evening draws closer tonight the worse it gets. I become very anxious and have spent the last couple of weeks in tears. I had been weaning off of some meds to see exactly what I needed, right now my psychiatrist has me on thorazine, haldol, tegretol and namenda. I feel this impending doom, I know it doesn't make sense, but it is so real and truly so fearful. I almost feel like a crazy person talking. Does any of your loved ones have this issue? How do you handle it? I have my husband stay in the bathroom with me while I shower and I sleep with the lights on. feel free to send me personal e-mails tiger@centurytel.net

Tracy (younghope)

Tracy, I'm so sorry you are going through this. I wish I had some suggestions for you but I never had to deal with sundowning. Actually Helen had just the opposite where she had trouble in the morning and got better as the day went on.

I know that most people do go through this and I'm sure they will have some suggestions for you.

Hi Lori,
Bill had problems with sundowning, but not as bad a what you describe. But that is just my opinion. I don't know how he really felt only how he acted. He usually started around 4PM and continued until about 6:30PM.
The doctor increased his seroquel. He was taking 25mg in the morning 25 at lunch and 50 at bedtime. I suggested giving him 25mg around 4PM and the doctor agreed. This seemed to help him.
Seroquel was the only thing Bill took regularly with 1mg of ativan when the seroquel didn't work.

I never wanted Bill on Haldol because I didn't like the effect it had on him. It would knock him out and he couldn't function the next day.

His sundowning didn't last more than about 3-4 months.

One of the things I did for and with him was to close all the curtains around 4 and turn on all the lights in the house. For some reason this seemed to help him.

Always thinking about you.

haldol can cause some of those as well....they used ativan/lorzapam/valium for mom----don't know much about the others....

Hi Tracy sorry to hear about your symptoms. I know when my grandmother was on Haldol she experienced intense sundowning symtpoms. Once we took her off the Haldol these cleared up for the most part. Ativan can definitely help with this, but it can also snow you, so I would try to get off of the Haldol is possible. I think that is an overly prescribed medication for Alzheimer's patients, and the side effects seem to be greater than the benefits (at least in my grandmother's case). This is an antipsychotic that is used in acute psychotic states, and I don't really know why such high doses are prescribed to AD patients.

Also, I just wanted to add that I have personally experienced this anxiety and feeling of impending doom as they call it. Although it was probably never as intense as yours, I can tell you that if you try and look at things objectively and repress your emotions briefly for that period of time that can sometimes help. Taking a step back and realizing that you are feeling this because of a psychological state, and not because you are truly physically in danger can help calm you down. Slow deep breaths through the nose help too as well as dim light in your room.

Thanks for you suggestions. I will see my doctor today and see if there is something else besides the haldol I can take. This is such an awful undescribeable feeling.

Tracy

What I found interesting with mom was how when she was at her house---just a little meds would send her off into lala land but in the hospital and stuff she was on some pretty strong meds just to "stabilze" / control her......her seroquel was over the recommended limit --- add to that morphine for pain along with ativan....how she could even rise and shine.....On her own one baby asprin or advil could knock her out....

Hi Tracy. I am so sorry you are suffering so. I do think you are on quite a medical cocktail, and wonder if a second or even a third opinion would help? Someitmes (my girlfriend's mom for instance) had a direct, & opposite effect, than they ought to (help me out here, Aitan!) and will send patients really through a loop. I have also heard weird things about Haldol, and am actually surprised it is still on the market. Thorzine surprises me too, because I think that is what they give to Bi-Polar patients, and you don't strike me as one.

I'd say go easy on the meds, or at least more of a few, but not so many different ones? Make sense? I am NOT a doctor, just my 'gut' feeling.

Went to my doctor yesterday and told him that I felt Haldol was making things much worse so he toook me off and put me on valium. So now I am taking valium, thorazine, tegretol and namenda. We talked to our pharmacist (its ashamed he can't be my doctor, I have more faith in him) he said to get comfortable on the valium and then maybe I could up my dose on the thorazine and do away with the valium. He said this was causes a comforting effect with the anxiety more long term then bouncing around so much as my doctor is having me do. It seems to make sense to me. Wish me luck.

Tracy

You have that, and all of our Prayers too! I am so glad you can ask for help, an tell us what is working, and what s not? I wish my Mom could. You are such a blessing!

I hope the change of meds help Tracy. I know I won't let them give haldol to Bill.

I think you're right about the pharmacist being more help than the doctors at times.

I wish you luck and will make sure to keep you in my prayers.

Gosh Tracy it really seems like your having a really bad time with those meds. I'll tell you, I really do trust the pharmacist much more where meds are concerned. If I have any reaction to a new med, I always call the pharmacy before I call the doctor. They're much more educated with combinations and reactions to meds then the doctors are.

Keep us posted on the happenings Tracy

Jackie

My dear Tracy,

I continue to follow your journey. You, my friend, are one of the bravest, strongest people I have ever known. Your insights and willingness to share them have helped so many on this board as well as the other.

I am sorry you are having such difficulty with medications. This whole struggle with the "right medications" seems so unfair and draining. With Mother, I, too, relied on the pharmacist much more than the doctors, who usually weren't as up-to-date or as educated in pharmacology. Continue with your persistent questioning so your doctor will be better able to help you.

By the way, I have tried numerous times to write you a poem but my words have always seemed too inadequate for what I want to say, what I feel in my heart. It is entitled "Because," which I took from one of your posts. I will complete it, sooner rather than later, and it will be my gift of admiration to you.

My thoughts, love and prayers are with you,

Joyce

Tracy,

When Old Navy had the sundowning, we found that keeping him on a nightly routine helped him a lot, and since we were with him during this time, he calmed down enough so that he could eat dinner and have my DH help him with the shower as it was needed.

I'm glad that you have your DH with you during your shower, as he is that second pair of eyes and his presence keeps you calmer.