Well, I did it, finally. I was afraid to take this step, but finally did. We had dh's 3-month regular appointment with his pcp yesterday, for his regular diabetes check. I went with him, and during the appointment asked the doctor for a prescription for seroquel. She knows the whole background on him. He's been with her for years. She prescribed, and he's now weaning off the Paxil generic, for two weeks. Then he will start the 25 mg of seroquel, first once a day at night for a week, and then twice a day, am and pm. He will still go to his neurologist appointment the middle of this month. I took the advice of someone on this site, and decided to have his pcp handle the seroquel, since dh sees her every 3 months for the diabetes.
Whew. I'm preparing for him to give me problems over all of this, but surely this step will turn out to be a good one. The pcp asked me, in front of him, if we plan on taking any more trips (we just got back from a 3 week one, and he couldn't have behaved worse). I said, "Not without him being on seroquel, I won't!" I told her also, in front of him, that "his anger is much worse than it was a year ago." He sat there through all of it, but I didn't care at this point whether he liked what I said or not. He did say he didn't feel he needed to be on Paxil, and I said, "Yes, he does." That was before we decided to go for the seroquel.
Oh, and I also asked her, when she prescribed the seroquel, "What about driving." "Not until he's stabilized on the seroquel," she said. He heard that, too.
Oh, yes, Bluedaze. Thanks for the support. I am so hopeful that finally, for once in this long marriage, I may have some peace. The marriage has been so difficult.
I wish my husband's Neuro would prescribe Seroquel. This has been the week from hell. I finally called yesterday, had to leave a message, but still ask them if we could try something else, the Lexapro worked for awhile, but things are taking a turn for the worse. Since the doctor was gone for the week the nurse increased the Lexapro to 30 mg. hoping that would help until the doctor returns.
Just started with Seroquel also. Will let you know how it goes. I also needed to save my sanity. Told PCP "if he doesn't sleep, guess who else doesn't sleep." Also needed something for the episodes of rage and anxiety.
The doctors backed my DH off on Seroquel because they thought it might be causing some of the swallowing problems. I had a bad episode with him night before last, had to call his son to come help me with him at midnight. I asked his GP to up the doseage back to where it was and so far he is more like his old self. Gail
I wouldn't have known about Seroquel if it weren't for you all on this website. It was your relating your experiences with it, and how it had helped you have some peace with your ftd dh's or dw's, that got me to ask for it. I am just simply so very grateful to all of you for this. I will let you know how he does on it. He doesn't take his first pill until Sept. 17. Until then, he will be weaning off of generic Paxil.
My DH was prescribed serequel to help him sleep better as he was up a lot in the night and as bookworm said when he didnt sleep neither did I .Serequel was just given at bedtime 50mg .The first week he was worse and I began to wonder if it was a mistake putting Don on Serequel and then after about 10 days things were much much better and more sleep at night for both of us .I did notice after he had his nightly dose he talked for about an hour to imaginary people until he fell asleep.Don was on it over 2 yrs ,then he went into a nursing home and they weaned him off it as the nurse there said if hes awake during the night the night staff will be there to see to him.It saved my sanity when he was still at home with me Rosie
Hanging On, I'm surprised that your doctor would order Seroquel because one of the possible side effects is that it can cause diabetes. Wouldn't it be bad then for someone who already has diabetes ?
I'm struggling with this myself right now; my dh has diabetes controlled by tablets and the neuro has promised to subscribe Risperal (same type of drug, also an atypical antipsychotic) and this too has diabetes or heightened blood sugar as a possible side effect. Somewhere here Joan has said that her Sid (who also had diabetes) was not prescribed Risperdal for that reason.
Can anyone help here? Do I have to get back to the neuro and ask him about the (increased) diabetes risk? I've tried to research this but so far have not found any information on whether it is advisable for people who already have diabetes to take these drugs.
Unless the blood sugars are very high (or low, which doesn't normally happen except as a result of medication) the main harm done by diabetes is the complications such as blindness and neuropathy. It takes on average 10 years of high blood sugar for those to develop. Given our LOs limited lifetimes, I wouldn't worry about diabetes until complications begin to develop. It can also be a contributing factor to heart attacks, but again I would pick quality of life over that risk. I haven't had to make the Serequol decision yet, but my LO with pre-diabetes eats a lot more sweets than he used to and I don't say anything. A good source of information on diabetes, particularly if you have pre-diabetes yourself, is: http://www.phlaunt.com/diabetes/
Pam, thanks, I agree entirely about the complications that you mention not being worrisome in this case, but I remember that in the discussion about coconut oil, Sunshyne, back in the days when she was posting here, mentioned that high blood sugar could make dementia worse. That is the only complication that I would be worried about. I struggle daily with the sweets issue, it is impossible to keep him from eating something he wants to eat so I try not to have stuff in the house. He eats too much anyway and is gaining weight again. What I'm afraid of is that the doctor will try to put him on insulin if the blood sugar stays too high -- but that would be next to impossible, so I think I would just refuse. Last time we were there for his quarterly check-up, she also expressed no worry about the long-term effects but said that the blood vessels that were affected by high glucose levels were EVERYWHERE IN THE BODY and looked at me meaningfully so that I thought she meant "in the brain as well."
This summer B. was having a lot of anxiety. His pcp doubled his citalopram (generic version of Lexapro) and prescribed Seroquel (at my request). I told her I needed something that I could give to him that would take immediate affect. So I see the citalopram as a leveller (of sorts). I did notice after 30 days, the citalopram kicked in and he didn't need the seroquel as often. He is on a very small dose (25 mg) daily as needed.
After reading your postings, I am wondering if I should give it to him daily so he can get used to it? Hmmm.
JeanetteB I don't know about the diabetes. I would definitely ask the neurologist. And then weigh the benefits and the hazards. Hangin On, I hope the Seroquel helps!
I was wondering why they would take your husband off the antidepressant he is on. I have read that SSRIs are helpful with FTD. My husband with FTD is on an antidepressant and seroquel. He takes a 25mg in the morning and 25mg at night but I can also give him up to two more 25mg tablets a day if needed. He was on the antidepressant before the seroquel but didn't seem to be enough.
Hanging on, I want to echo Deb's remarks. My husband was first put on Citalopram (generic for Celexa, an antidepressant, not Lexapro as someone said above). As time went by and some problem behaviors emerged, he was also put on Seroquel (an anti psychotic drug). He has AD, and the doctors at the memory center where he is treated use Citalopram as the antidepressant of choice due to lower side effects. There seems to be no problem taking both the Citalopram and the Seroquel--something you could check into. Since they belong to different drug families, I presume they each do something different in the brain--it doesn't have to be an either/or situation. A good reference for this is the book "Practical Dementia Care" that was written by several Johns Hopkins doctors and although it's not intended for laypeople, it explains the meds in a way that makes sense. Perhaps your PCP should get a copy?
JeanetteB--I did ask his pcp about how seroquel would affect his diabetes. She said in small doses (she's starting him on 25mg once a day at night, and then after one week twice a day), it won't have an effect. We'll see how all of this washes out.
Deb & Marilyn--At first his pcp was going to leave him on the Paxil generic, in addition to the seroquel. Then she looked them up, and decided the Paxil needed to go. She had a reason, but I didn't get what it was. If he doesn't do well with the seroqual, ie, calm down, I'll ask her again about an antidepressant. From what I could see, he didn't seem to be improved while taking the Paxil generic at all. His behaviors continued to be very bad.
HangingOn--When we were replacing the Thorazine (depression and moods) we tried several different meds to find the right one for DH. In no case did we eliminate one competely before starting the next. Cut back #1 and start #2, then reduce #1 add to #2, eliminate #1 and #2 at full dose by 3rd week. Some shifted quicker, but always the same pattern. Seroquel was one we tried, so it's possible that it will take over what the Paxil was supposed to be doing. I don't know that for sure, but seems possible. I think I'd ask about the weaning on and off method, rather than taking him, all the way off one before starting the other.
Kadee, this is late..I was away yesterday...but wanted to mention that Lexapro and Seroquel are entirely different drugs. Lexapro is an anti depressant and Seroquel is an anti psychotic drug. You should see a tremendous change with Seroquel, and do not be alarmed if he sleeps more. Sleeping or dozing more...along with weight gain have been the side effects of my husband taking 50 mg. twice a day. I love Seroquel. I believe it helps US more than them...because we can live with them a little longer. Some MD's won't prescribe Seroquel because it is an anti psychotic drug and they are not accustomed to working with it.
My DH has insulin injections once a day, and when on seroquel (or other atypical-anti psychotics) he had to increase the amount of insulin.
If any of your spouses do have diabetes and take insulin, remember at some point you will have to watch this as close as the pills. My DH can no longer identify carbs (not that following any type of eating diet is possible at some stage), or understand diabetes, and resused a disposable needle at least once. Like other things, I hovered and watched closely over time. Often he can not operated a blood glucose meter or correctly tell me what it read either. Just another thing to take over...
Put the cover back on the needle after use. The safest way to do this is to place the cover and syringe on a flat surface and slide the cover over the needle without letting the needle touch either the flat surface or your fingers. Only the inside of the cover should touch the needle. Do not hold the syringe straight up; you may accidentally stick yourself. Do not clean the needle with alcohol. Alcohol removes the silicone covering on the needle, causing it to become dull. Store the syringes at room temperature. It is best to store them with the covered needle pointing up to prevent insulin from blocking the needle opening.
Pat-if ok with the doc you can reuse insulin syringes
Thanks bluedaze. The problem about the reuse is that I hadn't gotten out a "new" one and he said he just used the old one. I really didn't know if he had taken insulin (as he said) or not. Just a warning to me that it was time to watch more closely. We now put all used syringes out of sight and hand immediately so he doesn't take extra insulin.
My Dh was prescribed seroquel and it made him very dizzy, and very sleepy. Now, he already sleeps a lot every day, but this was even more. However, it was a really bad week, so I crushed the stuff,and measured out about 1/4, and mixed it wit his pudding. I only did it when I knew he was in bad shape that day (like when I woke him in the AM and he flinched away from me. By the end of the week, he got back to himself again. and I stopped sneaking him the stuff. I have not been able to get to the Doc on the phone, or in person, and have decided to find another doctor who I can reach. I've been using the doctor at the VA and it's just too hard to reach him. Anyway, watch for side effects in the Meds. I'm going to ask for Resperal, or maybe just increase his zoloft abecause I believe lots of his mood problem is depression because he realized how bad off he is. You can imagine how difficult it is realizing you are losing your mind.
Thanks Pat, that's what I'm afraid of. DH would absolutely not do well with measuring or with injections. It's the reason I struggle to keep his blood sugar down in spite of his sweet tooth.
My DH cannot take Seroquel. I wish he could. He was on it for about 3 months, but it made his sugar very high (he is not diabetic), his BP very high and caused his arms and legs to swell. We had to wean him off of it and all those side effects subsided. I'm sure it doesn't affect everyone that way.
Jim is being evaluated for Seratonin Syndrome. It causes and elevated B/P, tachycardia, tremors, and much more. He is currently taking Paxil and a small dose of Wellbutrin along with Seroquel. We are either weaning him off the wellbutrin or lowering the Seraquel. I don't think he needs the welbutrin, and he could probably go down from 200mg of seroquel to 150 pm, he still needs the 100 mg in the am. We have a team meeting at the NH on Wednesday, will keep you all posted, (no pun intended ;o)
This is a good discussion and your comments are very timely. My DW now takes 200 mg of seroquel 3xday plus welbutron and cytalopram with no side effects. However, we are fortunate enough not to have a sugar problem. I was complaining about my dw's tantrums, temper and evening anxiety when another lady there said that her husband had had the same problems and that the dr prescribed Seroquel. I asked our neuro guy about it and he said yes. Wonderful medicine in our circumstances.
What dosage of Seroquel is your LO on? I called the neuro's office today and left a message with his nurse. She has called back and the neuro is suggesting adding another 25 mg to the 50mg DH is taking but the doctor doesn't really want to raise it that much because apparently it is a really strong drug. I have some of the 25mg left from when DH was on that and I am thinking of splitting them and try that along with the 50 at night. Opinions PLEASE!
My dh's neuro put my dh on 25 mg. twice a day for his behavior and it did nothing much for him. He then put him on 0.5 mg risperidone. It had really calmed him down. You might want to suggest this to your dr. I know each drug is different for each person but I could not have continued living with him if he had continued acting so badly on the seroquel.
jean my own opinion would be to go with the lower dose like you think.first and if you dont see improvement up it another half til you get to the drs recommended dose little by little. if that doesnt do the trick call him back and try the risperidone like others suggest if dr oks that.you might want to try 2 different doses during the day ..but others have more input with this particular drug.
I was kind of having second thoughts about raising the dose of the Seroquel but DH mentioned twice the reason I called the neuro's office. So I have split the 25mg and put the halves in his pill box. He will take the first dose tonight but I don't expect it to work that fast! I'm sure he will notice the extra half there and will want to know why so I have to come up with an answer that will satisfy him.
I have just returned from spending a week in hospital with my DH trying to sort out why he has to pass urine every 1/2 hour or so. He had a cystopy done which found he had an enlarged prostate, but not large enough to put him through surgery - they are treating him for an overactive and irritated bladder with various meds.also. Whilst we were at the hospital DH was seen by a psychiatrist who took his history and changed several of his other meds. and one he put him on was that seroquel. I was staying in his room with a blow up mattress as the staff didn't have time to toilet him and chase after him down the halls etc, and last night was his first dose of 50mg Seroquel, he was up and down all night, both of us hardly getting an hours sleep all night. Maybe that it will take a while to kick in, sure hope it calms down the "weeing " and the sun downing for him and the staff at the N/H. It was hard sending him back to the NH, it was nearly as bad as when he went four weeks ago, lots of tears but I know I can't do it on my own. I take my hat off to you that take care of your LO's who have such heavy needs, the NH appears to look after DH quite well after a rather shaky start.
Dh's internist put him on 50mg of Seroquel. The first time I gave it to him he fell asleep and I couldn't wake him up to get him to bed. The next day I cut the pill in half and did that for about a week. Then I went to 25mg in the morning and the other half at night. I am now giving him the 50 mg at night with no side effects. He does not get so agitated and hasn't been battling me over showers etc.... so I guess it is working.
Well DH has taken the extra 12.5mg of Seroquel for two nights now and he hasn't mentioned the yard. A while ago he was on a paranoia kick. A week or so ago a couple walking their dog stopped to talk when we were sitting on the porch. The husband told us the old man around the corner had died, I believe he had a brain tumour. Now DH is saying the husband was mad at him for who knows what reason. I say "old man" but my DH is the same age...82! I can take the not knowing how to do things and not remembering but I cannot take the hallucinations and the paranoia. If it keeps up I will raise the Seroquel to the 25mg. So far he hasn't noticed he is taking an extra dose at night!
mothert, If you Google Seroquel you will find everything you need to know about it. The 50mg DH was on stopped the hallucinations and some of the paranoia but the past couple of weeks they were coming up again, which is why I called the neuro about raising the dose.
My DH is on 25mg of Seroquel once at night. I find it funny that the first sentence on the instruction sheet is: Do NOT give to dementia patients. Go figure!
I am giving serious thought to taking my DH off the extra 12.5 of Seroquel. He is sleeping a lot longer than usual. He went to bed last night before 8.00 and just got up at 10.20. He had been getting up between 8.30 and 9.00. I have already taken the 1/2 pill for tonight out of his pill box. If he starts with the paranoia or hallucinations again I will just have to learn to IGNORE and not try to explain and reason with him. Wish me luck and lots of it!!!!