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  #1  
Old Apr 14, 2015, 08:32 PM
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BeyondtheRainbow BeyondtheRainbow is offline
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This is not a new experience for me at all but today it feels like the worst thing ever even though it's not even close to the worst I've been. But I am so, so tired.

I have bipolar I with mixed episodes and rapid cycling and have been hard to treat from the beginning. I've done better with high dose Seroquel XR, Emsam, klonopin and a couple of drugs that do less (gabapentin, topamax, both at low doses), for quite a while. Because Emsam is activating when I've been most agitated over the last several years I've used valium at a low dose and it has always worked well at getting me to sleep but not over-sedating me. Sleeping pills are completely ineffective for me so having that valium working when needed has been important but I didn't even realize how much until it hasn't been working.

Since January I've had this episode brewing and the last month has been bad. Sleep has been very difficult and if I use the Emsam at full dose I don't sleep but I can't cut it down much because I'm also depressed and need it. Sunday night I think my body finally hit rock bottom and I slept for 7 hours. Since I woke up 35 hours ago I've slept one hour. I did see my psychiatrist yesterday and we figured out a way to reduce my Emsam dose a bit and since valium has either done nothing or has knocked me out so long that it affected the next day I'm going to try liquid valium to see if I can get my sensitive body to accept some specific amount. That had to be ordered of course so I have to wait for tomorrow to start it. My Emsam patch has been off since yesterday night and I'm going to leave it off until tomorrow when I have the valium that hopefully will help.

I've had a lot of hypothyroid symptoms and was hoping that was going to have some answers but the labs came back and apparently I'm just tired; my thyroid was fine. I've been exercising every day that I've had some sleep. I am recovering from ankle reconstruction surgery and just now am able to do more with my ankle after a year of either being injured or recovering from surgery so I can't just go for 3 or 4 mile walks like I have done in the past when this manic; my body tolerates 1-2 miles and then my ankle is about done although it is getting stronger. I've only been out of a brace for about a month and my surgery was in June so I have a long way to go to be in shape again (and several more months of healing. I need to go back to PT but there is no way I can do that while going through this episode).

I really just need to hear that I'll sleep again sometime. I know my body is tired and yet I'm not the least bit sleepy even though I was too manic to even lay still by 4 AM and I didn't lay down until 3. And even though I've done this many, many times the present one always feels bad enough when it is happening, no matter how much worse I know it has been. I'm beginning to be afraid this will lead to the hospital and I hate the hospital when I'm agitated. I don't love it ever but it feels like special torture when agitated.

I don't even have much of a point, I just needed to say this to people who understand.

Thank you.
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  #2  
Old Apr 14, 2015, 09:30 PM
Anonymous37883
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Have you tried melatonin, benadryl, zestril? tylenol PM?

I am the same way sometimes. About 1 or 2 days a month zolpidem just does not work at all. Nothing works.
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  #3  
Old Apr 15, 2015, 04:45 AM
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Wander Wander is offline
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Sorry to hear you are suffering so much. Have you tried any Atypical Anti-psychotics? When I am mixed or manic I find Olazapine (Zyprexa) or Quetiapine (Seroquel) help a bit to give me at least several hours of decent sleep, if not more. Depression is hell too. It will pass (I am trying so hard to remind myself of this at the moment). Hang in there.
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  #4  
Old Apr 15, 2015, 04:58 AM
BastetsMuse BastetsMuse is offline
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I really do hate it when the mind is going great guns and the body is tired.... or when the body should be tired and isn't. I do understand; you certainly aren't alone.
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  #5  
Old Apr 15, 2015, 06:19 AM
avlady avlady is offline
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yes you are not alone, i have insomnia really bad sometimes and then i'll get the sleep i need after being up for long periods of time and i'm fine again. just going through the episodes of no sleep is the pits though. i do understand and feel for you and will pray you can get back on schedule.
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  #6  
Old Apr 15, 2015, 04:12 PM
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BeyondtheRainbow BeyondtheRainbow is offline
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Quote:
Originally Posted by ValentinaVVV View Post
Have you tried melatonin, benadryl, zestril? tylenol PM?

I am the same way sometimes. About 1 or 2 days a month zolpidem just does not work at all. Nothing works.
Yes, I've tried all of those except zestril. They either don't work or in the case of Benadryl make me more manic. Zestril isn't an option because I have low blood pressure already.

Unfortunately there aren't many meds that I can take that I haven't tried at some point which makes treating this even more difficult.
  #7  
Old Apr 15, 2015, 04:27 PM
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BeyondtheRainbow BeyondtheRainbow is offline
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Quote:
Originally Posted by Wander View Post
Sorry to hear you are suffering so much. Have you tried any Atypical Anti-psychotics? When I am mixed or manic I find Olazapine (Zyprexa) or Quetiapine (Seroquel) help a bit to give me at least several hours of decent sleep, if not more. Depression is hell too. It will pass (I am trying so hard to remind myself of this at the moment). Hang in there.
Thanks. Yes, I'm on a very high dose of Seroquel, so much that I can't have any more of it. Zyprexa does not sedate me. And the others I can't take; Geodon caused uncontrolled mouth movements, Abilify caused akathesia (cannot stop moving and it is horrible), Risperdal causes high blood pressure which is too bad because it also does work. Latuda doesn't work for me. Saphris interacts with something else I'm on. If I have to add anti-pyschotic is has to be an older one ad my psychiatrist would rather add Depakote at a low dose than that. I HATE Depakote. My body doesn't process it well and I don't want to even try it because a low dose is unlikely to work and will land me on a high dose and I never want to do that again. I was on a ton of it 3000 mg or more for years and that barely kept my blood level at the right place but it had a lot of side effects. So I'm hoping to avoid that.
  #8  
Old Apr 15, 2015, 04:34 PM
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BeyondtheRainbow BeyondtheRainbow is offline
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I finally slept last night and through today. I still feel awful and hope I sleep again tonight but at least I'm not running on 1 hour anymore. I have to get ready and to get the liquid valium that hopefully is going to help me actually sleep consistently and I really don't feel like going out but I know it will be hard to sleep tonight because I crashed so hard last night that the mania is just waiting to take back over (right now the depression is much stronger). My family dr confirmed that I feel terrible because I need rest but of course he has no way to get me that rest.

Tonight's big step is probably going to be taking the liquid valium, which I understand tastes terrible. I know pharmacies could flavor liquid meds a few years ago but I don't know that my current one does. I guess I'll find out.

Thank you all for the support. I really needed that.
  #9  
Old Apr 16, 2015, 05:38 AM
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Wander Wander is offline
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I really hope the liquid Valium works. Benzodiazepines (like Valium) can also be extremely helpful in calming us down and allowing sleep. Sounds like you have tried a lot of meds. Must be really frustrating. Hope things pick up soon. Hang in there.
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  #10  
Old Apr 16, 2015, 02:39 PM
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BeyondtheRainbow BeyondtheRainbow is offline
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It turns out that my insurance requires prior authorization for any diazepam. So I didn't get the new prescription and have no idea when I will. Hopefully it will help that I've been using the pills on and off for years and have a history of them making a big difference when I have times like these with my MAOI is simply too stimulating yet I need it. The trick will be that I'm already on klonopin and so my dr will have to explain why I need 2 benzos. But she's very good at convincing people that it's better to give in than to fight with her. Years ago she fought for me to get Provigil and kept refuting the denials until we got an unprecedented "approved for life" ruling.

Hopefully it will be quick and they won't give her a hard time about doing this even though it is not usually the best idea to take 2 benzos. It's a last resort and hopefully the insurance sees that quickly.

Quote:
Originally Posted by Wander View Post
I really hope the liquid Valium works. Benzodiazepines (like Valium) can also be extremely helpful in calming us down and allowing sleep. Sounds like you have tried a lot of meds. Must be really frustrating. Hope things pick up soon. Hang in there.
  #11  
Old Apr 17, 2015, 08:06 AM
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Wander Wander is offline
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Quote:
Originally Posted by JustMeJen5294 View Post
It turns out that my insurance requires prior authorization for any diazepam. So I didn't get the new prescription and have no idea when I will. Hopefully it will help that I've been using the pills on and off for years and have a history of them making a big difference when I have times like these with my MAOI is simply too stimulating yet I need it. The trick will be that I'm already on klonopin and so my dr will have to explain why I need 2 benzos. But she's very good at convincing people that it's better to give in than to fight with her. Years ago she fought for me to get Provigil and kept refuting the denials until we got an unprecedented "approved for life" ruling.

Hopefully it will be quick and they won't give her a hard time about doing this even though it is not usually the best idea to take 2 benzos. It's a last resort and hopefully the insurance sees that quickly.
Good luck!
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"Phew! For a minute there I lost myself."

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Thanks for this!
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  #12  
Old Apr 17, 2015, 09:49 AM
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  #13  
Old Apr 28, 2015, 01:27 AM
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Rayray2863 Rayray2863 is offline
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Gosh I'm so happy I'm not alone, but at the same time so sorry you go through the same things I do. I can take 5 melatonin and nothing, Tylenol pm seems to keep me awake, and sleep is a constant battle every day. Sometimes I can go long stretches w little sleep and then crash days later. Good luck with the Valium. I am on Effexor and Klonopin and they worked at first, but not now.

Last edited by Rayray2863; Apr 28, 2015 at 01:28 AM. Reason: Forgot to add meds
  #14  
Old Apr 28, 2015, 07:23 PM
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BeyondtheRainbow BeyondtheRainbow is offline
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I'm sorry you are going through this. I wound up having my Seroquel dose increased to 1500 mg and went back on oral valium which I am taking in 2 doses as I get sleepy. It works some nights and some nights I don't sleep at all. I'm on 1/3rd of my AD and that's been just about too much so that's tricky. I slept last night so tonight may not be good. I'm hoping it is but I don't think I've had 2 good nights together yet. My psychiatrist has been good about staying in touch and I see her in less than 2 weeks so hopefully we'll get things more under control either before then or when I see her. Right now my biggest fear is that I'm going to crash into depression being the predominant mixed symptom and I won't have AD in my blood to help. But I can barely tolerate what I'm on so going up isn't an option. Yesterday I had only 3 hours of sleep but today was better. Hopefully it will be better again tonight although I'm much less exhausted.

Quote:
Originally Posted by Rayray2863 View Post
Gosh I'm so happy I'm not alone, but at the same time so sorry you go through the same things I do. I can take 5 melatonin and nothing, Tylenol pm seems to keep me awake, and sleep is a constant battle every day. Sometimes I can go long stretches w little sleep and then crash days later. Good luck with the Valium. I am on Effexor and Klonopin and they worked at first, but not now.
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  #15  
Old Apr 28, 2015, 08:59 PM
Anonymous37883
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My psychiatrist won't let me take provigil. It doesn't make you manic?
  #16  
Old Apr 28, 2015, 10:12 PM
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BeyondtheRainbow BeyondtheRainbow is offline
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I don't know about now; it probably wouldn't be great now. Back when I was working it was very difficult to sedate me enough to sleep but not so much that I couldn't wake up. So I was just sedated all the time and dragging and it made work very hard. So we tried a little provigil and the only time it made me manic is if I was kind of on the edge anyway and in that case I would feel the mania pretty soon after taking it and a PRN benzo would usually kind of protect me. I never had it cause a real problem but I was also always on a lot of sedation (for a long time I was on 3200 mg of depakote and 300-600 mg of Seroquel plus a benzo and maybe other meds that were sedating (APs) or occasionally sleeping pills that didn't work.) So it was kind of like the antidote to the sedation. It took a long time to decide to try this and it was monitored really carefully but it did work fine for me and I think I was on one or the other for 5 or 6 years.
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