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Dr. Bob is Robert Hsiung, MD,
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Posted by SLS on January 15, 2010, at 10:58:49
In reply to Zonisamide/Zonegren, posted by inanimate peanut on January 14, 2010, at 22:34:32
> Has anyone taken it? What do you know about it? Impressions? I want to use it to pull the bottom of the depression up in Bipolar, Mixed Type. My Geodon controls the mixed states and Parnate helps with the depression, but I need something else for the depression too. I was thinking about this.
I tried Zonegran to treat bipolar depression. It didn't help, but it didn't hurt. I don't recall experiencing any significant side effects.
- Scott
Posted by inanimate peanut on January 15, 2010, at 12:20:05
In reply to Re: Zonisamide/Zonegren » inanimate peanut, posted by Phillipa on January 15, 2010, at 10:50:26
I have a feeling this is one of the things they may look at at Stanford so I was just curious. I'm still on the Wellbutrin but won't add anything else until after my Stanford visit. By the way, my blood pressure has been fine since I got off the high-dose Parnate.
Posted by janejane on January 15, 2010, at 12:51:16
In reply to Re: Zonisamide/Zonegren, posted by inanimate peanut on January 15, 2010, at 12:20:05
Glad your BP is better. It's only a few days now, isn't it? I'm so excited for you!
Posted by willey on January 15, 2010, at 18:32:20
In reply to Re: Zonisamide/Zonegren » inanimate peanut, posted by janejane on January 15, 2010, at 12:51:16
I took it and it made me psychotic.
Posted by willey on January 15, 2010, at 18:49:45
In reply to Re: Zonisamide/Zonegren, posted by willey on January 15, 2010, at 18:32:20
Sorry dident realise how vague i was.Listen iknow what has happend recently was no ones fault,however i feel like phillipa feels,which is are you asking because you want to add this.
Let me inform you,on most sites,even including its officaial data sheet,zonegran sounds great,affects glutamte and gaba,which are what most mood stabliers due,reduces weight,and controls mood.
HOWEVER,and i promise you this,and this i also made the mistake of ignoring a fellow babbler telling me the same same,zonegran has a side profile that is in depth in its effect on dopamine.
Its very techincal,and explained well,and as said has a major affect on dopamine.Why this is not mentioned,aside from a small warning of possable mania on zonegrans sites i dont know.I dident dig it up,you can google zonegran and its affect on dopamine.
When i took it,the first few days were well,then i subtly fell into a spiral of a mixture, of psychosis,insomnia,apathy beyond u can imagine.
Examples are i stopped getting dressed,stopped shaving,took on a 2 week computer task,being obsses with it,when it was totly a useless task,and had huge emotional outbursts from time to time.
Thankfully,i some how realised,or some way some how was able to take a look at my self,and see it,i then immediatly traced back my steps,remebered what the babble wrote,and then after stoppping,in a few emotional days came back to normal.
I thank that poster,also when i came back,i immediatly sought after the drug and as to how its profile could do that to me,thats when i easly found a very in depth technical feature of this drugs ability to hit on dopamine sites.
If it werent for my support around me seeeing how i changed,but more so since im stubborn seeing it for myself,the next place i was heading was gonna be a stay at a place u dont wanna go.
You have to really stop jumping meds like this,i feel,and mean no insult,that this is beyond augmenting and can be dangerous,and only hope u really treat each and every single add on as if it could be fatal.i use that word only becuase i want to stress that parnate although very forgiving,can also be a nightmare if you keep testing it.
Posted by inanimate peanut on January 16, 2010, at 1:29:32
In reply to Re: Zonisamide/Zonegren, posted by willey on January 15, 2010, at 18:49:45
Time out. This is to willey but also just to generally clear a few things up about me, because I'm getting the feeling from several people about med jumping, etc. First of all, calm down. I am not jumping meds. I have not been jumping meds. I am gathering all the data on everything I can find because I'm making a list that's the only reason I'm still here (on earth-- I just like babble). Maybe thinking about having Zonisamide as an option to add to my list is the only thing that's going to get me through today? it makes me feel like I have options and gives me a reason to get up in the morning and continue to believe that there maybe a snowball's chance that someday I can get better. Yes, I do ask about alot of different meds, supplements, etc. And I have taken none of them except the high dose parnate, Ritalin to control the hypotension, and just now Wellbutrin (and NAC as a supplement because I'm not just testing it but plan to continue it as a part of any combo). I know that plenty of people on this board probably think like willey and Philipa that I am some petulant irresponsible child, but I'm only trying to learn as much as I can about as much as I can in as many ways as I can (here, journal articles, Stanford) to make sure there's something on that list. As for the Parnate incident, I had journal articles saying that they used it safely up to 170, and I wasn't going any higher than 160 because of that. I increased it more quickly because I didn't have enough of the medication to try it more slowly and I had to know if a higher dose would work. I had the problems with hypotension but they went away with a tiny dose of Ritalin. I knew I was taking a risk, and it just happened to turn out badly for me. I only knew my BP was so high because I was responsible enough to buy a monitor and take it whenever I felt odd, which many people wouldn't have done. I still with the Wellbutrin monitor BP morning and night (it's been fine, by the way) and do check-in's for serotonin syndrome symptoms at the same times. I track my moods on a neat little chart so I'll be able to know if there's any change objectively. I self-medicate and don't tell my doctor about it-- that's not responsible but it is the only way to try some things that may work. Once again, I take risks but I know I'm doing it and it's my right to do them with my body. If getting better is more important to me than the risks associated with it, that is my choice. I am in a time crunch, yes. I have to go back to work March 26 and will lose my job if I'm still like this. So, I prefer shorter trials to longer ones. But, I'm not an idiot. I was a Marshall Scholar with 2 degrees with distinction from the University of London before bipolar took it all away. Now the only thing I can do is to try to learn, to research, to ask questions, to add things to my list, so I can get up tomorrow and do it all over again. So please, just let me ask my questions and don't take that away from me. I'm not doing anything with it but clinging to it hoping it will work someday soon. I really respect you willey and pretty much take your authority on Parnate and I'll take into account what you said about Zonisamide. I really appreciate everyone on here who was so supportive and caring when I was in trouble. I just want people to know that I'm a smart woman who can take care of herself (although knowing people are there for you is one of the great parts of this community). I love this community and want to be a valued member. I've been on upwards of 20 meds and can be an asset to people asking questions. But I don't want to be somewhere where I'm looked down upon or viewed as a liability. By the way, the only reason I was asking about Zonisamide is because I'm going to Stanford and the doc there is known for his work with new anticonvulsants-- I figured I would educate myself before heading in. In my book, that's responsible. Nope, Wellbutrin and I are hanging in there (with no results and none expected).
Posted by willey on January 16, 2010, at 3:13:43
In reply to in peanut's defense, posted by inanimate peanut on January 16, 2010, at 1:29:32
Lol first in my defense if you have the degree you stated,then why did you need myself or someone else to find the data you needed.
Look,i dont know where you came up with such strong accusations,but im sorry if you couldent tell it was out of concern,but your right,your an adult,and it would have taken much much less of a post to say the same thing.So with respect i will disontinue posting responses,and i regardless to your feeling in the post,i do wish you luck.
Posted by SLS on January 16, 2010, at 5:46:44
In reply to Re: Zonisamide/Zonegren, posted by willey on January 15, 2010, at 18:49:45
Hi Willey.
Can you post a couple of links to the literature you referred to involving the actions of Zonegran on dopaminergic activity?
Thanks.
- Scott
Posted by inanimate peanut on January 16, 2010, at 9:36:03
In reply to Re: in peanut's defense, posted by willey on January 16, 2010, at 3:13:43
Obviously my post came across far, far different than I meant it to. I hate electronic communication for that reason. I'm not saying I don't need yours and everyone else's help and that one of the main reasons I'm not here is because people are caring and look out for each other (including me). Also, you have the experience to know more about Parnate than I will for years if ever. I only mentioned the degrees thing because I feel like people on here think I'm an idiot who knows nothing. Maybe I'm just paranoid and people don't feel that way, but I just was feeling that they did. I know you and Philipa were both posting out of concern and I appreciate that (just as I appreciate everyone who has expressed caring and concern during the last few incidents). I just especially wanted you to understand that I wasn't jumping meds and why I was asking so many questions. I wouldn't have felt the need to explain myself so much to someone I didn't respect and value their opinion. So, I am rambling again so I will stop but please understand that I wasn't trying to attack you with my last e-mail, and I hope you will continue to be around with your wealth of Parnate knowledge. I would really missed you if you weren't.
Posted by Willful on January 16, 2010, at 11:52:54
In reply to Re: in peanut's defense, posted by inanimate peanut on January 16, 2010, at 9:36:03
Just be honest about what you're doing IP. You are med-jumping.
I don't care how many degrees you have or where you got them. You say you read in an article that people did 170 mg parnate, and you were o nly going to do 160 mg because of that. Where's the logic, or reasoning, in that? Do you know that these people were dosed under controlled circumstances, by careful doctors monitoring their responses? did you consider the dosing schedules? did you even imagine that the dosing schedules might, just conceivably might, have some importance? And that jumping in three or four days to 160 mg from 60 mg had nothing, I mean NOTHING, to do with what these people you read about did. And wasn't any kind of reasonable method for testing how you responded to any particular dose between 60 mg and 160 mg?
What you did not only endangered yourself, it gave you no chance to have a good response to a higher dose of parnate, and was a travesty of what you read about.
Then, by the way, you threw in Wellbutrin, because you read somewhere, etc etc.So just be honest about what you're doing. And admit that you're inexperienced, naive, and not an expert in the field of psychopharmacology. You, in fact, really don't know what you're doing.
Not only was I worried sick about you for quite a while, but I think you did yourself a major disservice in your search for a better med regime.
Let the Stanford people tell you what the Stanford people think. How can you possibly imagine what they'll recommend? the reason you're consulting them is that you can't.
I'm sorry you're having such a rough time of it. We've all been there. We';ve all had our promising lives torn apart by this condition-- and we've accepted that we need medical advice to find the best treatments-- and the safest treatments. Find a reasonable pdoc and depend that s/he knows infinitely more than you do about all this.
Willful
Posted by willey on January 16, 2010, at 11:56:08
In reply to Re: Zonisamide/Zonegren » willey, posted by SLS on January 16, 2010, at 5:46:44
Here scott,i was informed by two people,pre informed sadly,one by a babble,and one out left field in a general chat which was eerie.,I posted this in the first place because it is not mentioned much in zonegrans initial data sheet info.
Heres a snip from the first article,
"Reports of zonisamide-associated behavioral deterioration and psychotic episodes are increasing.[14, 15] The frequency of psychosis is higher than that reported for epilepsy-associated psychosis. In addition, none of our patients had demonstrated behavioral disturbances or psychotic behavior before receiving zonisamide therapy
These actions, as well as increases in dopamine transmission, may demonstrate zonisamide's multiple modes of action related to hallucination pathogenesis"
http://www.medscape.com/viewarticle/448287_3
Posted by SLS on January 16, 2010, at 13:45:22
In reply to Re: Zonisamide/Zonegren, posted by willey on January 16, 2010, at 11:56:08
Posted by inanimate peanut on January 16, 2010, at 15:05:49
In reply to Re: in peanut's defense, posted by Willful on January 16, 2010, at 11:52:54
I didn't go from 60mg to 160 mg in 4 days-- far from it. I started at 60mg and went up 20mg every 3-4 days until I got to 160mg. You're right that I didn't have the dosing schedules and all from the articles. I went too high on the Parnate and I paid for it. I admitted that I was wrong there and should have stopped back at 120mg when everyone encouraged me to. I'm sorry that I made you worry and appreciate that you actually care.
All I know about pharmacology is what I've learned in recent weeks (which I admit is barely anything). That is one reason I ask so many questions on babble. I put quite a bit of faith in journal articles combined with what I'm told here (what other people have tried, etc.) and then I just monitor things very closely. The reason that I chose to go on Wellbutrin was not only because "I read it somewhere" but because it used to be one of my best drugs and it deserved a shot at working (and yet it seems to be proving my theory true that once I go off a med it doesn't work when I go back on it). My doc still thinks Wellbutrin is contraindicated with Parnate (much of the literature still says it is, which is why I monitor it so closely), so this one I can't leave in her hands. I am trying to do everything in the safest way that I can.
If you want to think I'm med jumping, I guess that's your right. Besides the Parnate, Wellbutrin's all that I've been on for mood since I've been on this board. Everything else I've asked about (Remeron, Neurontin, Nortriptyline, Zonisamide, T3, etc.) are just part of the list of options for some point in the future. Except for the Nortriptyline, they're all options I can work through with my doc, which is what I plan to do.
Posted by Phillipa on January 16, 2010, at 19:25:56
In reply to Re: in peanut's defense » Willful, posted by inanimate peanut on January 16, 2010, at 15:05:49
Peanut gathering info is great but with Stanford only a few days away maybe wait til you see the doc to actually try the med? And you seriously need to let the doc know your're using wellbutrin. Yes I care. Phillipa
Posted by janejane on January 16, 2010, at 19:47:52
In reply to Re: in peanut's defense » inanimate peanut, posted by Phillipa on January 16, 2010, at 19:25:56
Guys, Peanut needs our support right now, she doesn't need to be scolded. The past is the past. I don't think it's wrong for her to gather information in preparation for her appointment. In fact, I think it's a good thing. Please try not to jump to conclusions about what's she may or may not do. She's trusted us enough to share what she's going through. We should trust her too.
(((Peanut)))
Posted by inanimate peanut on January 16, 2010, at 20:56:43
In reply to Re: in peanut's defense » inanimate peanut, posted by Phillipa on January 16, 2010, at 19:25:56
I'm definitely waiting until my doc prescribes and monitors the med. I only did Wellbutrin on my own because my doc doesn't believe it can be combined with Parnate. Everything I've got on my precious list now will be done under my doc's care (except Nortriptyline, which is why I've listed it way down on the list).
Posted by inanimate peanut on January 16, 2010, at 20:58:47
In reply to in support of Peanut, posted by janejane on January 16, 2010, at 19:47:52
Posted by Phillipa on January 16, 2010, at 21:51:55
In reply to Re: in peanut's defense, posted by inanimate peanut on January 16, 2010, at 20:56:43
Peanut ask away. Not that I know anything!!!! Love Phillipa
Posted by inanimate peanut on January 16, 2010, at 22:47:55
In reply to Re: in peanut's defense » inanimate peanut, posted by Phillipa on January 16, 2010, at 21:51:55
Posted by Willful on January 17, 2010, at 0:20:19
In reply to Re: in peanut's defense, posted by inanimate peanut on January 16, 2010, at 20:56:43
I'm very sorry if my prior post seemed too harsh, but it was written out of concern.
Willful
Posted by floatingbridge on January 17, 2010, at 23:17:16
In reply to Zonisamide/Zonegren, posted by inanimate peanut on January 14, 2010, at 22:34:32
peanut, I'm hoping your consult is worthwhile and enlightening! I'm going with a list of possible meds, even if it's just so I might know what the doc is talking about. And I intend to ask about ldn.
Good Luck!
hugs,
fb
Posted by inanimate peanut on January 18, 2010, at 8:48:02
In reply to peanut, will you tell us how it goes? » inanimate peanut, posted by floatingbridge on January 17, 2010, at 23:17:16
I'm really anxious about it. I'm at the airport now. My flight's been delayed for an hour, so it's good I'm flying in the day before!
Posted by janejane on January 18, 2010, at 9:11:01
In reply to Re: peanut, will you tell us how it goes?, posted by inanimate peanut on January 18, 2010, at 8:48:02
> I'm really anxious about it. I'm at the airport now. My flight's been delayed for an hour, so it's good I'm flying in the day before!
Yeah, it's a good thing, indeed! I'm so glad you're still connected with us while en route. Isn't technology grand?
Posted by Phillipa on January 18, 2010, at 19:16:11
In reply to Re: peanut, will you tell us how it goes? » inanimate peanut, posted by janejane on January 18, 2010, at 9:11:01
Peanut you there and settled in? Love Phillipa
Posted by meltingpot on January 20, 2010, at 6:26:56
In reply to in peanut's defense, posted by inanimate peanut on January 16, 2010, at 1:29:32
Hi,
Just want to say that your thinking sounds so much like mine. I can understand totally why you are desperate to try new things, I'm the same.
Denise
This is the end of the thread.
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