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Not over yet; yet so much to report with Ray's EEG test, and not all good



So finally, Ray reported to the hospital Tuesday afternoon to begin his 48 to 72 hour EEG. This is a test for seizures, headaches, that type of thing; it's not for everybody. The psychiatrist insisted Ray have it, plus a test for sleep apnea, the apnea consult is scheduled for next week. I am pretty sure Ray has apnea; both of these tests were ordered because Ray is having early morning sleeping problems. Wakes up to use the bathroom and can't get back to sleep, which really upsets him. He worships his sleeping time. This doctor recommended the hospital he is associated with, which is a very small, high end kind of place. Quite well regarded. I ran it by Ray's neurologist who we saw a week or so later, and he of course wanted it done in his hospital, which is the biggest around and a university type place, which has its advantages too.


First, to be polite, I decided to check out the university. Turns out the doctor that did Ray's Botox is also in charge of sleep and EEG testing. We heard him finish with his previous patient and burst in our room a minute later, much too quickly to have read the twenty pages of forms I had to fill out. Says looks like you need these tests, I will have my place call you. Boom, $120 in his pocket. Turns out it's not the hospital but a warehouse in a seedy neighborhood, and Ray will do the EEG at home. Meaning, we go there, they put all the wires on his head and go back home for a few days. The apnea testing is there too, but that is overnight and he warned me that there are only techicians working there, so since Ray needs help with the bathroom and such, I'd have to stay the whole time with him. I wasn't thrilled, so was happy the place never called to make the appointments. To tell the truth, I was looking forward to having Ray safely in the hospital and a little time to myself to try to relax for a change.


So then I call the psychiatrist's hospital. They immediately set everything up and I felt very comfortable with it all. Totally professional. I find out the EEG doctor is very well known; despite his young age he has written several college textbooks plus tons of published studies and reports, and is connected with the local nuclear science lab. We meet him and he is fantastic. He spent a lot of time going over every detail of Ray's history, as if he was going to include him in his next book.


Ray was mellow enough when we checked in, I kept warning him it would be a few days but he didn't seem upset. He got a private room, right off the nurse's station with a great view of Port Jeff harbor. The food was restaurant quality and the staff couldn't have been nicer. Then the second day, after I left, Ray took a turn for the worse. Turns out they changed his antiseizure meds, which is what the psychiatrist had wanted as opposed to our primary doctor. There was a little power struggle going on there. But it wasn't a gradual change, they just took him off dilantin and put him on depakote. When I questioned that , the doctor said it was OK since he was in a hospital setting. But Ray's reaction seemed to say that wasn't true.


Thursday, I called Ray around 10 and he seemed to say don't even bother coming, I figured because it was starting to snow. I thought of all the things I needed to do around the house and got started. Then an hour later, I got a call from one of the nurses, could I come in right away because Ray was going nutty. I ran over there and then walked in on him having a seizure, which is really unusual for him. They all seemed thrilled that it was caught on the EEG however. Me,not so much. That is not a regular thing with him, it's only happened maybe four times in the last year, since the first one.


So I settle in, obviously I will be staying awhile. After he comes out of it, he becomes argumentative, angry, wants to go home in no uncertain terms. Cursing, yelling, the whole ward is being disrupted. I am trying to calm him down but he is grabbing my arms hard enought to make black and blues, and scratching me in the process. They finally got a strait jacket kind of thing and tied him to the chair. I am truly feeling like the biggest loser! The doctor was luckily in house and was called in; he kept asking me if this was the usual way Ray acts. I honestly said, he can be argumentative, and when he won't give in, then I usually will. But no, not like this. But there was no going home for him tonight and when Ray realized that, he went really beserk.


The gave him xanax, and then they gave him more xanax. They gave him a double dose of remeron early. They asked me to stay until 7 when the night nurses arrived and they would assign someone just to him. There was no calming him down. They were considering a shot of something heavy duty if he didn't stop by 7. Then dinner came, I had forgot to order with all the excitement so he got what was left, turkey. And it did what they say, finally put him to sleep (along with all the drugs I'm sure). I waited 15 minutes until he started snoring and ran out the door to drive home in the blinding snow, feeling so beat up. And here I am, wondering about tomorrow, will Ray get out of the hospital, or get put in the psych ward? And should I cancel the meeting with the daycare people, which I was really looking forward to. The night nurse questioned me before I left, and said she thinks it's a drug reaction, because it came on so suddenly. I knew they were thinking of switching the anti seizure, but not like this. I didn't even know anyone would do it that way, between the mental aspect and the possibility of seizures. Guess I'll find out tomorrow, maybe call my primary although I know it will upset him.


Well we have our next psychiatrist visit Weds (if I can get Ray there, this could have repercussions right down the line) so maybe some answers then. But I am getting tired of all these psych meds being given to Ray like he is a guinea pig!


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Don't worry, I will continue the saga tomorrow, after I speak to our PCP! And hopefully spring Ray from his prison. Just joking, I'm hoping to get some useful info after the dust settles, but this is not how I pictured it!

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My goodness. What an ordeal for both of you. That switching the anti-seizure med so suddenly doesn't make sense to me either. Sure hope he settles down before you bring him home. ~~Donna

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I'm amazed at the sudden changeover, I would have thought a lessening of the old drug and then an introduction to the new drug would be the way to go. I agree hospital is a safe place to do it but the effect on the body must surely be highly stressful.


I feel sorry for Ray and for you, for him because he obviously is suffering to act out so and you because of the driving in the snow storm, pretty risky business.I am glad you were there with him when he needed you. I hope some good comes out of this for both of you.





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Just called the day care director to tell her we probably won't make our appointment today, and she had more answers for me than anyone else so far. She said there has been a medical directive to take patients off dilantin from the Federal government for the last year, there are too many serious side effects, and Ray's reaction is very normal with the quick switch. She also reminded me to see if he has a UTI, he never has before but since he is confined to bed, his urinary habits aren't really his normal ones. OK off to leave messages for all the doctors : PCP, EEG doc, psychiatrist who ordered the test and might as well call the neuro too, even though I didn't use his facility so he'll probably be secretly happy.

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WOW, that is a bit much on your plate as his care giver but you handled it as best you could. Thank God you didn't use that other facility it could have been much worse with nothing accomplished.


I'll stay tuned in hoping for the best results for Ray in getting to the bottom of his medical situations. So my prayers are said for his needs at this time.

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Oh my, this has to be so difficult for you, seeing Ray like this and handling it all alone! Take care of yourself!

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more info i didnt know............. ref. the dilantin, still had they told you at least you could have been ready for the fall out..... i am pretty sure thats the fall out we are seeing to, somewhat although dan was titrated off instead of dropped ... ouch well babe you know my offer is there..!!

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Colleen: just don't know where to begin. Just I am so sorry. Your gut was right! Why oh why would one change any medications before the test, to get the baseline results? How can you determine what is wrong, if anything, if you mess with the basics beforehand?


Any for poor Ray. Must be totally confused not to mention the confusion his brain-body are giving him. With what they put into him, just to calm him down a bit, will keep him out of th Psyche ward. Typical medicine: if one drug doesn't work, shoot him up with some more. Don't look to the underlying issue - the med change.


Oh honey, just get him back on his Dilantin and do not take him home until those levels are therapeutic. Let the hospital deal with the issue. Then get him out of there and back home. Praying for both of you. Debbie

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Thanks Debbie (and everyone else!), I ended up being forced to take half your advice at least. I called all of Ray's doctors this morning and they all returned my call quickly. But as I have been learning as the number of them grow, they are a secret society who won't speak against each other, especially when they are not affiliated with the same hospital. Every doctor we have is with a different place. I got sympathy but not any real advice. Last on my list was the doctor at the hospital doing the test, and long story short, he wanted to keep Ray there another day to watch for more seizures but did let me take him home without too much argument. I'm sure the ward was happy to see him go; they called me at home a couple of times this morning to see when I was coming because they couldn't calm him down again. They should put me on their payroll!


So I get there and the doctor comes in right away with the EEG technician and they get Ray unhooked. I haven't seen him so happy in a long time! Must have been so scary, he showed me in the drawer they had used arm restraints, he was still wearing the jacket I had already witnessed yesterday (I already knew though, they told me on the phone, and I don't really blame them). So then the doctor gives me the prescription for the Depakote, and tells me not generic, has to be the real thing. He gives me a toll free number for a place that would ship to me, but I told him I'm sure my CVS can take care of me, Medicare pays for everything and they haven't let me down yet. He said well good for you if the government will pay for it, and I got a bad feeling.


So I stop at CVS on the way home, and the counter girl looks it up and says I can't get this through Medicare. Something about prior authorization for formulary, mumbo jumbo to me. I go home then call them back for clarification, the manager tries to explain further and says call Medicare to see if they can override it and get me a few til I figure it out. But first I call the 800 pill place, and as I suspected, even if I did get it through there, they couldn't ship until Monday or Tuesday at the earliest. Everyone is asking why the doctor didn't send me home with a few, my guess is he wasn't real happy with us in the first place. Then I call Medicare, who says call Part D, which I do only to find they can't do anything for me. This is all going down just before 5 on a Friday, so despite these frantic calls plus the hospital doc and my PCP, it was too late to talk to anyone who can help. I gave up and had Ray take the dilantin, of which I have hundreds on hand. Ray is supposed to go for a depakote level check Monday, prior to his Wednesday psych visit (the psych doctor is the ringleader here, he's the one who started all this trouble) I was so exhausted I just didn't care enough to find any other solution. Tomorrow, hopefully I'll think of something else, or get through to someone, but I am NOT paying for these meds. They are not cheap! If that's what it comes to I'll keep him on the dilantin generic which are free. What a waste!


Oh and as we were driving away from the hospital, Dominican Sisters in home agency called to say since we left the hospital Against Medical Advice, they can't come back until I get all kind of doctor notes. Since they still haven't sent a new aide, I hope they don't think I care! Hopefully this daycare thing will work out eventually.

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oh my gosh..............colleen, this crap has got to end sometime.... all this upsetting ray for basically nothing...... they make a big push for depakote , and seem to have an idea you are gonna have trouble but dont send pills ... geez... i dont have any great or brilliant advice , just support and commiseration.....

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I'm sure the doctor would tell the story a lot differently than I did, but everything I said is true to me. I'm sure he had a good plan in mind but Ray thwarted him in a major way. Knowing Ray, I wasn't surprised, actually more annoyed at his antics in the beginning; but guess it was shocking to the hospital staff. He likes to cause a commotion when things don't go his way, that's just him being him. Something to talk about in the staff break room for the next few days at least (along with nibbling on the Irish soda bread I brought for them to celebrate Ray's discharge; when I get nervous I start cooking!)


Sort of worried about the appointment he has at the same hospital Tuesday for sleep apnea, which is a condition I'm pretty sure he has by the sound of it. His psychiatrist who ordered all these tests is trying to find out why Ray sleeps so much and why he hates waking up at a normal hour. He's always been a real nightowl, but now he goes to bed earlier so he's sleeping about 12 hours a day and uses xanax if he can't, rather than just getting up and facing the day. Tuesday's appt is only a consult, not the actual test, so hopefully I can get Ray there and then schedule it for a few weeks from now. I do want to be careful not to let the doctor think I'm being "non-compliant", especially as a caregiver. I'm pretty sure I have a lot more of a lacksadaisical attitude than most they see.

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Sting, Ruthpill works with the Medicare Part D and blogged about it a few weeks ago. She talked about the formulary. Prescriptions can be changed and ordered if you know the right way. I think your doctor just has to intervene saying the other med did not work. I can't believe Medicare would deny the new prescription after all Ray has been through.


Good luck and hope you can get some rest.



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I forgot about Ruth! I spent the whole night on the Medicare website and was much more prepared when I called his Part D provider today. Who knows, maybe I talked to Ruthpill! Turns out it's not as big a deal as I thought, my doctor just has to call the authorization line and get prior authorization by saying that Ray's life or health may be at risk. Which he has repeatedly told me, this morning I got in touch with him (he must live at the hospital) and he told me Ray can die if I don't give him antiseizure meds every 12 hours, and that generic isn't going to cut it. He wasn't happy when I told him I know that, so I subbed the dilantin instead last night. I could hear the steam coming out of his ears!


No rest for the weary, he did approve the generic for now, until we get this sorted out, so I have to run back to CVS to pick them up; Ray only now just got up (past noon, but he must be exhausted) gotta get some pills in him stat! I'll run on nervous energy today, despite all my big plans didn't get much done while he was gone and want to catch up with cleaning this weekend.

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Colleen: I know Ray can be difficult. You and I have spoken about that in the past. But you also need to accept what was done to him chemically, in a very short amount of time. Push liquids as best you can. You have to flush that stuff out and get the new meds on board. And let him sleep. Couple of down time days. You need to crawl in next to him as well. You have plenty of food already prepped. Do as little as you can, read, nice hot bath if you can fit it in.


I am going to be interested in how the Neuro checks in on all of this. And yes, I agree. To send someone home on a life or death medication without enough stash for at least the weekend and Monday was unconscienable-even if it was AMA. And how did it get to that? And really, just for Home Care, which you weren't getting anyway, really doesn't matter much. But I would just be angry the "Team" of Professionals blew it and then blamed Ray. Go easy honey. Know I am thinking of and praying for both of you. Debbie

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It sounds like a major screw-up - to change his meds to something you can't get and not send you home with any, you need to scream that in their faces! What a mess, all I can do is pray for you both, we need miracles (=doctors who are not idiots!!!) I have not found any doctors who are not idiots here, I'm not sure where they hide... Keep us posted as to what is happening.

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Thanks everyone for your support, reminds me of what this group is all about! I now realize that this will be all over soon, and just another story for the funny stroke book I'm going to write someday ;-). The "real Depakote" is approved but I had to call the poor hospital doctor again for him to call CVS again to fill the prescription they already have, but as it was originally written. Maybe I'm grasping at straws, but the doctor did tell me it was imperative to not use the generic, maybe because of the sudden switch. So if I can pick that up later this morning, hopefully there will be an improvement. We use almost all generics, but when you get the name brand there is quite the difference in effectiveness. Unfortuanately, there is also quite the difference in price! And therein lies the rub.


The doctor at the hospital is titled as a neurophysiologist, and I do trust him implicitly. He is really top of the line and I'm glad we went this route, rather than the out patient facility. The psychiatrist kept telling me it would be more thorough, but I think he was being polite and understating the case. I feel like maybe Ray and I threw a cog into the master plan; we did go over Ray's psychiatric history on the first day but unless you live with it 24/7 it doesn't seem like such a big deal. Sandy: I wish I could scream in their faces, but I signed the AMA to get Ray released so I don't have any legal rights against the hospital anymore. And I accepted that, I felt getting Ray out of his straight jacket would help as much as any medication at that point. Plus the doctor knows his specialty; he's not an insurance expert, he knows what Ray needs but it's my job to actually procure it, and figure how to pay for it. He has helped us out more than I would have expected in that regard. I understand why the doctor wanted to wash his hands of us, since we washed our hands of him, not that I haven't spoken to him at least three times since we left. And the psychiatrist gave me his cell and I've spoke to him twice. I really do trust my doctors, and I'm sure I'm not the first overemotional patient they've had to deal with. I look at them more as afraid of a lawsuit than not wanting to help, but maybe that aspect is worse here in NY?


The second I told Ray he was going home, he was so so happy; all the way home, he smiled and pointed at all the snow and everything else to show how happy he was to be out; he knew I was upset and was actually trying to cheer ME up! And he was fine all day Saturday despite the wacky dispensing of meds, it was only Sunday night when he started having psuedo seizures that I began worrying, but he probably would have been home already when they started. I am just so burned out, thought I'd have a nice little vacation while Ray at the same time got a big boost in his recovery trajectory, but as they say, the best laid plans of mice and men often go awry!


The hospital doctor's secretary is taking care of CVS, should have the good stuff later this morning. We have the apnea consult at the same hospital tomorrow and I told Ray I would stay overnight with him when the time came; he acted like I didn't have to but maybe I should insist! Then the psychiatrist Weds and we'll get some answers finally, Ray left so suddenly that the doctor hadn't had time to look over 72 hours worth of EEG, but since they caught the seizure we should have some kind of info, no matter how insignificant it may seem.

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This has been a really bad stuff-up all round for you. Why don't all the medical departments listen to one another, surely this has happened before? The caregiver bears the brunt of all of this so I agree with Debbie, if he sleeps you sleep too.


The worst aspect of my Ray changing medication was always explosive BMs so I would get set up with old sheets, plastic sheeting etc as soon as he had the first dose. Sometimes I asked for a change if the side effect went on and on.


It may seem funny in the future but in the meantime go gently on yourself and on Ray as these kind of episodes can affect you for a while.


(((hugs))) from Sue.

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Thanks Sue, now I have something to be grateful for, Ray's change in meds usually make him either argumentative or scared of his own shadow, but at least nothing to clean up afterwards! I will be on the lookout if he goes over the top, I did that when they gave him Keppra at first, immediately demanded a change. I'm the one that has to take the brunt of it, and usually at 3 in the morning on top of everything...Ray has a weird relationship with the wee hours.

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And now we have the sleep apnea test set up for next weekend, in which there will be more wires overall to deal with . But this time, I'm staying with him, it's only from 8PM to 6AM; plus the real Depakote is finally kicking in and mellowing him out (what a difference from generic!), so shouldn't be as traumatic I hope! They gave us a tour and the room looks more like a motel room, Ray seemed to approve. I still think the sudden change in meds was the real problem though, sincerely believe they were trying their darndest to get Ray to have a seizure so they could catch it on the EEG.

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