Cetkat Posted March 11, 2012 Share Posted March 11, 2012 Something quite odd happened today. As you may or may not know, I've been having severe difficulties all over the place. I've been away for quite awhile and it's been hell, frankly. I posted about it a bit here: http://www.crazyboar...with-me-update/ http://www.crazyboar...odays-business/ All of that is pretty much the same. Nothing new, really, other than that I'm definitely going to the parents tomorrow and asking for some Avelox from my favorite GP - as well as the fact that my niece (who usually is with my brother on the weekends cause he's in college) will also be there all week starting Monday. So I'll get to see her! Then I come back up Friday for the CT. So, yeah.. back to the point. I've been taking more Mirapex for the previous 3 days, 1.5mg rather than the 0.75mg I normally take. I have a backlog from being too sick to take it and I noticed that my sleep kinda went to crap after a certain point of not taking it. Waking up 3+ times a night type of thing. It's annoying, tiring, and Mirapex fixes it. Also, when I used it with my crazily long combo of last, I had a significant effect on my mood. Largely initial, but it did something. I had dropped it from 1mg down to the 0.75mg, so it made sense to go back up. At minimum.. it would help the sleep issue. I actually didn't expect it to do anything at all for mood, but I humored the thought & hoped that it may do something for extra severe moods, even if it doesn't do anything for my average level depressive ones that I've seen. Well, yesterday I got sleepy in the middle of the day and crashed, slept, woke up, slept and kept sleeping. Given how sick I am, that's natural, if abnormal due to horrible insomnia. It reminds me of when I was on Metadate and napping when I was hypothyroid (level-wise) still. This is an unusual occurrence for me. Then, sometime in the afternoon today.. I started feeling... I dunno, less dead, detached? Then that evolved into a kind of nervous - more socially active - positive-ish mood. It's like a tiny segment of when I added it and Saphris to my last combo and got the hypomania-type start-up. (This state re-occurred, though slightly more mildly, when I changed the Mirapex dose to the next highest one as a solo med change.) It doesn't have that same kind of mood kick right now in the least... but it is a feeling that I've only felt as an aspect of that. So another unusual occurrence. Together, this makes me think that Mirapex 1.5mg may actually do something after all?! This is the 4th day I've taken the 1.5mg. Perhaps I never took this dose post combo for that long or something? Or maybe it's something completely different. Either way, there's *something* up with this, Mirapex or not - although there really isn't any other possibility. Nothing else has changed. I only took the AP anti-nausea med a couple of times over a week ago & my stomach has yet to get bad enough for the limited amount of Zofran I have now. It's not allergy meds, or my Thyroid med, and Strattera's at the same dose as ever. Nothing else is left other than coincidence. But I don't feel like this with any regular state. This is induced by something. Then there's the fact that, other than Lithium & Lamictal (which are in classes of their own); it's Cymbalta, Abilify, and Mirapex/Saphris that did the most - ever - for my mood. Amitriptyline didn't hurt, but it was nothing to write home about - the uses for sleep/migraines would have been good enough for me even if it hadn't had a slight effect. Of these, Lithium only works when other things work and Lamictal/Abilify/Mirapex/Saphris have far better initial positive increases than long-term. Not sure why that start-up activation beats all - it just does. Almost like a taunt. But the point is, what the standard-class meds have in common is that they do one thing or another with dopamine. The Mirapex increase touched that and only that, and was quite positive, if brief. So, yeah... it's a quite unexpected experience. Then, I thought about it a little bit more.. and the idea hit me that I was on Abilify the first time while Cymbalta still worked. They seemed additive. What if I added Cymbalta to the Mirapex and Strattera I'm taking, but leave the Mirapex where it is (or even up it to 3mg per some studies on it being used in that fashion for mood issues, successfully)? Ok, that's not a bad basis. Of course a real cognitive help feature is missing - Strattera does zero for noticeable concentration. Given that I'm not typing an MAOI into that, I could actually use one without it being an issue. So, lets add Vyvanse (the med my really good pdoc wanted me on but I couldn't get in his trial - too many meds and no insurance coverage at his office to see him normally.) Now we're looking good. Of course there is one more thing that caught my interest quite a bit awhile ago. It may be a long shot, but with all the meds that affect dopamine, why not put something in that seems to simply make it more functional rather than changing levels? Zofran (Which I've yet to try but have. Just waiting till it's needed.) So, all together: Mirapex 1.5-3mg (study), Zofran 8-16mg BID (study), Vyvanse 30-70mg (random range for completeness), Cymbalta 60mg, and Strattera 80mg I honestly don't believe I'll ever get Cymbalta to kick in again, but that med does have a certain place in my heart. And what if it did? That's guaranteed significant improvement. Plus, I think a pdoc would like it. Makes the combo look more normal. Ironically, when I went to the one pdoc that brushed me off, he gave me a Cymbalta script. No idea if it can be filled, but I did give it to the pharmacy. It's possible they filled and returned it to the shelf, if so, that makes it shift to the year refill expiration rather than the 3 months or so on a script. (At least some part of me wants to say 3 months - could be more). I did email my old good pdoc a bit ago... asked about that trial (which of course is now over) but they're still doing ones along those lines. It's not impossible that he has one on his schedule - or knows someone who does (I asked that too). The study may want just the Cymbalta and Vyvanse, but if so, that would still tell me if the Vyvanse works. I think a placebo there is rather obvious - if they're even using one. It looks like not all the studies do. Anyway.. I thought of something! And I don't think it's all that wack, right? Seems sensible enough. * Goes to watch the flying pigs * Link to comment Share on other sites More sharing options...
Cetkat Posted March 13, 2012 Author Share Posted March 13, 2012 Ok, so far the mood increase is sustaining itself as far as I can tell. I'm visiting now and keeping odd sleep hours due to multiple people's schedules and being located on the couch, so some mild sleep deprivation could be at play. However, seeing as I tend to keep a 12/12 schedule of sleep/wake in general, that's more about a difference than something really low. Perhaps about 6 hrs of actual sleep put together and at least 4 hrs of laying down & resting is what I'm averaging at the moment? It's hard to say where I'd be if left to my own devices. Anxiety-wise, I'm in a high-anxiety environment and handling it fairly well. I don't know where that would be naturally falling either. In spite of the humor in the above post, I actually am being fairly serious about the medication idea. I'm just keeping my skeptical guard up. Let down's are difficult. That's not something I need. I'm used to getting a boost (which on the more ineffective ones presents mainly as anxiety - the mood part of the activation is on the tail-end) for a couple of days on things like AAP's and Lamictal before either having it dissipate or finding myself with a start-up backlash (with Ability/Lamictal) that has to go away before the long-term positive kicks in. Kinda like how the start of the roller-coaster is always the highest - save my coaster is largely uneventful. Saphris/Mirapex wasn't a state to stay in, obviously... but the higher the start, the more it ended up working later in the right way. The activation is a side-effect, not an end result. Everything just had zero sticking power. That's why this is so abnormal. It built up and is just hovering at a low-ish, yet significant, state. If it were to even out then it would easily fall above my entire last combo's end result. Not that that's hard to beat, but dude, that was the best result in almost a decade. The best in the post treatment-resistant era. (It's sad how I can type that and not feel like I'm being pretentious...) I'm really shocked that a 0.50 change could produce this type of effect. That's the benefit of real testing for psych purposes I suppose... you end up with a very convenient effective dosing range. 1.5 mg is the max that's normally rx'd for Mirapex. 4.5mg is something I saw for an augmentation therapy for treatment-resistant depression. Obviously, if you add things to it which also act on dopamine, that number should drop. Vyvanse and Cymbalta fall in that category, among other ones. Adding some mediation of where that additional dopamine then goes with Zofran (seemingly), appears to be a perfectly legitimate approach to me. You don't want it where it doesn't belong after all, and the Zofran just seems to correct problems without influencing the actual level present. It could *actually* work. Or this could dissipate and everything could fall flat on it's face. I suppose the ideal thing to do is just maintain it here and see what happens. I got the GP appointment scheduled for Wed. I plan on asking for an official increase (she's the rx'er as my pdoc was limited by indication rules at the clinic he works at). I don't know if I'll get it, she's not psych, but she is smart & usually willing to work with me. I think I have a good shot. It helps that the 1.5mg is an actual dose and not experimental. I wouldn't ask her to go there. We'll see. If anyone has any thoughts on this, feel free. Link to comment Share on other sites More sharing options...
Cetkat Posted March 14, 2012 Author Share Posted March 14, 2012 I'm back from my GP appointment. I now have Avelox 400mg, 10ct and a new rx for Mirapex 0.75 BID for a per day amount of 1.50mg. I'm going to wait until after my CT scan to start the Avelox. I don't want anything to get hidden. I love my old GP here. Her concern wasn't even the off-label use... she just said to watch out for side effects like NMS. As long as I don't get them, I can take it. Which we're of the same mind on. I think I'm going to request Cymbalta at my next pdoc appointment. That seems to be the next logical step. Yesterday had me trying to do way too much at the same time, I felt off & ended up kind of all over the place energy-wise. Today was just really calm however. I think it's because I finally got some good sleep - a nice bit all at once rather than half-hazard throughout the day. I did get woken up, but at least this time it was in a nice, deep dream rather than being barely asleep. Seems like a positive development. Link to comment Share on other sites More sharing options...
HAL9000 Posted March 15, 2012 Share Posted March 15, 2012 I'm just glad you posted. Your maybe the first person I ever "talked" to about this and I was worried where you had gone. Second I hope you get better soon and get some answers to whats going on. I'm a mega wimp so the comment you made about being in serious pain and not having any pain meds? I would be crying to the doc. If your having infection like pain I'm really surprised your not going nuts over it. I had a minor infection and it one of the top 5 "ouches" ever. Reading your posts I think your a little like me. A lot of people I know just go to the doctors, get a script and take it. They might know what its supposed to treat but they don't know the possible side effects of look at the list of drugs your not supposed to take with it. Me? I have to read up on everything and before I see the doctor I have to write a cheat sheet of questions etc. More along that line I worry about my Doc continuing to refill prescriptions. *Even tho I see her on a regular basis. And even tho its never been a problem. Today I'm obsessing over my diazapam refill. One problem that I have that I don't think you have is that I find it very difficult to "complain" about how a drug works. For example asking for a dose change or to change meds to see if one works or not. Thankfully my GDoc has me figured out and is not the "ANY QUESTIONS? OK GET OUT" type. Oh! I did want to add one more thing. You said that one of your teachers said he was surprised you were suffering depression based on observations in class. I'm no expert but I thought I was giving off a healthy positive vibe (Even tho to me I was really messed up) Most people didn't clue into this. Two did (my GP and a TDoc) and thankfully I got over the stigma issues about all this and have some good treatments that work. Anyhow - I wonder if there is some condition where a patient has an ability to put on a healthy (happy) face? Oh! One thing that got me diagnosed correctly was the Nurse saying to me "BE HONEST" when they gave me those 1-5 How often do you feel like flushing your head in the toilet?" type of thing. Link to comment Share on other sites More sharing options...
Guest Recluse Posted March 16, 2012 Share Posted March 16, 2012 A lot of people I know just go to the doctors, get a script and take it. They might know what its supposed to treat but they don't know the possible side effects of look at the list of drugs your not supposed to take with it. Me? I have to read up on everything and before I see the doctor I have to write a cheat sheet of questions etc. This. Oh god. I thought I was the only one that did that. I have to check and recheck every time I get a new script. Link to comment Share on other sites More sharing options...
HAL9000 Posted March 19, 2012 Share Posted March 19, 2012 A lot of people I know just go to the doctors, get a script and take it. They might know what its supposed to treat but they don't know the possible side effects of look at the list of drugs your not supposed to take with it. Me? I have to read up on everything and before I see the doctor I have to write a cheat sheet of questions etc. This. Oh god. I thought I was the only one that did that. I have to check and recheck every time I get a new script. I'm glad there are two of us doing this. I was starting to think I was nuts. Oh wait... I am.... <SIGH> Link to comment Share on other sites More sharing options...
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