View Full Version : Hope Actually Gets A New Med Trial!!!!!


justhope
10-02-07, 06:30 PM
:eek: Ok so I have been so lucky so far that I haven't had to ride the rollercoaster many of you have. However, I have to admit while my treatment has been very successful and my life has certainly changed for the better...
In true Hope form, I had one last thing I just had to be a rebel about.

I was prescribed Risperdal shortly before the BP diagnoses for severe PMDD.
Then I was just supposed to take it about 3-5 days prior to the "dragon" appearing. Which worked wonders. On one of my other visits I mentioned still struggling with the whole sleep thing and my doc told me to try taking 0.5mg at night...versus the 1mg-2mg for the PMDD. Well I did for a minute...but geez it makes me sooo groggy. I hate to get up anyway, period, but since I have kids I have opted to work dayshift..versus my prefered second...so I am always tired..and hate getting up in the mornings...this DID NOT help.

I also rebelled because being a full time employee and mom with ADD leaves me with lots to do afterwork and the weekends...and since I am ADD I often don't get it done....and then my engine is revving all night...and I think I am going to miss something..so I don't want to sleep...

So I explained that my Lamictal is wonderful and has really gotten rid of about 90% of the depression. In fact I can't really remember when the last "typical" depressive episode visited? The woe is me and apathetic one? I have still had some of the aggitated one's but they are fewer and farther between. They are mostly brought on by stress triggers , rather than a true cycle. However, the mania has not subsided enough. With the unpleasant side effects of the Risperdal...this has given me the perfect excuse to not take them.

So he said I am giving you 2 options.
The first is to take the "fast" disolving Risperdal, so about the time you put it in your mouth it will disappear before you change your mind. Try that for a couple of nights ...or a week.
The second is a perscriptions for Neurontin. Only a very light dose 100mg. He said this medicine seems to have less side effects than most. It will help you sleep, but not knock you out like a horse tranqualizer..and the groggies aren't that bad and seems to disapate faster....He said the other thing is it's great for the mania. Especially the "crabby" anxious one's. He said bascially it turns of the "beeahhtch" switch in the brain.

So I will hit the pharmacy ...Friday since I never take new meds during the week...we will see how it goes. I am trying the Neurontin first...since I already and very familiar with the Risperdal.

I guess we all have our little rebellious sides. Something the pull of BP has.
I am determined to change it because it only hurts me.

Ok I am done...
Any feed back on the Neurontin? I saw some about it in Wishes thread? Any one else?

Spongedaddy
10-02-07, 06:53 PM
Hi Hope. Good luck with the new drup. Please let us know how everything turns out.

speedo
10-02-07, 07:41 PM
I took neurontin to get some relief from hyperacusis. It helped and had few side effects. It does act as a mild mood stabilizer and it will help you sleep.

The down side of it is that it only works for some people , about 40-60% of those who take it will get some benefit from it.
It has something to do with the way gabapentin is metabolized... apparently some people can not metabolize gabapentin "correctly" and the neurontin will not work for them.

It's a strange medication. There is a maximum effective dose, and if you take more than that, it's effectiveness diminishes.

It's commonly prescribed for epilepsy or for neuropathic pain.

If you are taking it for tinnitis or for neuropatic pain it will take several weeks for it to take effect. Also, you have to titrate up to the full dose slowly, and when you stop taking it you really do want to taper off of it gradually or you might not feel so good...


ME :D

Crazy~Feet
10-02-07, 07:58 PM
Space took it, Hope, for quite a while actually. She was able to taper off quite rapidly as well when she went over to Lamictal. I do not think she hit as high of a dose as she might have needed, though. She was quite sporadic with it, too, as opposed to the Lamictal, where she really feels a difference and complies willingly.

I know its got a nice way of reducing sensory issues, if you have any, at least that's what she reported. I'll see if I can get her on later to "speak" in her own "words"...although she may be a little smartassed about it and insist on using the same words that everybody else uses, you know, the regular English ones? :rolleyes:

I hope it works well for you, and I know you'll keep us posted. All the information we can gather here is good stuff to spread around, and you know that very well.

Good luck, Sis! :)

spacemania
10-02-07, 08:04 PM
Neek fluck flarney quandel FLOO!!!

Yeah, Neurontin made me all "Buh buh buh buh buh buh buhh..." and whenever I'd try to stay up during school? "ZzzzZZZZzzzzZ..." When I tried to go to sleep at night? Yeah. Sure. I went to sleep but I was so tired the next morning I was all tired and draggy, and I'd often fall asleep on the couch. Ugh. I HATED it.:faint:

speedo
10-02-07, 08:08 PM
yes it does reduce sensory issues. In my case it reduced them a lot.

Me :D

VisualImagery
10-02-07, 11:15 PM
Good for you Hope! This is not my area, but I do hope this really works for you! You deserve it.

Hugs, VI

Matt S.
10-03-07, 08:50 AM
I hope you get the help you need, Neurontin in my experience has this one recollection that I can remember and that was this feeling of a warm blanket when it kicked in.

justhope
10-03-07, 10:37 AM
Thanks guys/gals...

I actually chatted with my mom last night (another one of the nurses in the fam besides Tam's...and she "specializes" in physc, go figure) and she said that like the Lamictal...they have had success with many of thier folks who are on it. She said it is one of the more prescribed off lable drugs along with the Lamictal.

My mom and Tam's are usually the first one's I call asking what do they know about it..etc....since they would both know working with phsyc patients.
So I am ok with it.

I won't take it until Friday...so if it knocks me out ....I will be at home.

I know its got a nice way of reducing sensory issues, if you have any, at least that's what she reported. I'll see if I can get her on later to "speak" in her own "words"...although she may be a little smartassed about it and insist on using the same words that everybody else uses, you know, the regular English ones? :rolleyes:
I don't know that I really have sensory issues? If I have them...they are not like your supersniffer ....or I am so used to them I don't know the difference. I am extremly sensitve to "sounds" ...like the buzzing of the stupid flouresant bulbs above my office and any type of high frequency sound that apparrently only dogs can hear, but I figured that was just the ADD. I should probably research that some ....so that is a plus?


Neek fluck flarney quandel FLOO!!!

Yeah, Neurontin made me all "Buh buh buh buh buh buh buhh..." and whenever I'd try to stay up during school? "ZzzzZZZZzzzzZ..." When I tried to go to sleep at night? Yeah. Sure. I went to sleep but I was so tired the next morning I was all tired and draggy, and I'd often fall asleep on the couch. Ugh. I HATED it.:faint:
Tell me how you really feel, kiddo? LOL
Well I will let you know if I snooze and drool at my desk?


Good for you Hope! This is not my area, but I do hope this really works for you! You deserve it.
Hugs, VI
Whatcha mean, not your area? Meds or BP section? Cause if it's BP section...all are welcome here! Thanks for the support buddy!

I hope you get the help you need, Neurontin in my experience has this one recollection that I can remember and that was this feeling of a warm blanket when it kicked in. Really Matt? That sounds very nice..especially cause it's getting cold here...LOL ....


I will let you know this weekend !

justhope
10-15-07, 04:35 PM
Confessions of a BP donkey. I just started my Neurontin this weekend. Bad girl I know...I messed up my sleep schedule again...up all night Fri..so that was it...and I like it so far....a gentle ease into sleep, not the tranqualizer feeling or dizzy thing..and the groggies weren't to bad this morning...I will let you know more in a couple of weeks unless something bad happens....

Crazy~Feet
10-15-07, 05:03 PM
I don't know that I really have sensory issues? If I have them...they are not like your supersniffer ....or I am so used to them I don't know the difference. I am extremly sensitve to "sounds" ...like the buzzing of the stupid flouresant bulbs above my office and any type of high frequency sound that apparrently only dogs can hear, but I figured that was just the ADD. I should probably research that some ....so that is a plus?Many ADDers have some type of sensory issue or another, even if it is a mild one. I am just blessed to have a lot of them and they are not so mild. :rolleyes:

The buzzing of the lights may be less annoying/intrusive now? Let us know. I'd be interested to hear how a low dose works...because um...erm...well, Abilify is leading to the same side effect I got from Risperdal :eek: and I'd like to explore some other options before The W puts me on something funky.


Tell me how you really feel, kiddo? LOL
Well I will let you know if I snooze and drool at my desk?
What the Vyvanse-less Space forgot to mention was that she was taking a lot more than you are. That was quite a while ago but I THINK she was taking between 800-1000mgs. It was supposed to be her mood stabilizer; it was not RXed for the same reason yours has been.

justhope
10-16-07, 12:00 AM
I am actually blessed in that area too then CF...my sensory issues are not overwhelming, just annoying. The buzzing of the lights don't bother me on my ADD meds...and hopefully less now.


I will certainly let you know. Yes my doc told me my dosage which is recommended only up to about 300mg if needed is mild in comparsion to those who don't use it as off lable treatment for BP. And because it's so "mild" in that dose he thought it would be good in addition to the Lamictal since the Lamictal has certainly done it's job in the depression area. So we will see. I will let you know for sure my dear.

Crazy~Feet
10-16-07, 01:15 AM
I would really and sincerely appreciate that, my cycling sister. I have had such problems with AAPs giving me the same bizarre side effect :( although they work great. APs have given me problems in the past, too. I am very leery of trying another one. I am hopeful that Neurontin might turn out to be an option for my agitation.

justhope
10-18-07, 06:51 PM
5 full days in.

I actually had to force my mouth open to take them...and Monday morning I was a little groggy and loopy...but then again I went to bed early woke up...stayed up until after midnight and umm took it then..dumb de dumb dumb dum.....
So I can't even blame that on anything but me.

I am accutely aware if I am going to take these to sleep, I need to freaking take them BEFORE 12am! Heck i need more than 8 hours to feel normal, when I am normal :eyebrow:

So the other night I took it about 10pm...I was asleep by 12am..and the groggies wore off by the time I hit the door for work...and were gone by my first cup of java...this is a good thing.....

I like it because they don't give me the dizzy feeling, they don't make me fall asleep like a horse tranqualizer...I am still able to wake up if needed. My baby was sick the other night ..stupid allergies and he woke me up a few hours after I feel asleep and I was fine....

I believe Matt described it best, it's like a warm fuzzy blanket....I think I am able to over ride it...if I wanted to. I have not attempted to try over the min dosage of 100mg....and hope I don't have to. I have woken up like I said, but was able to go back to sleep with no problem. So driftly off to sleep slowly and comfortably is something I am most happy with. This has allowed me to continue to take it everynight...without a fight..

So I will keep you updated KZ ,,,so far so good...no deedeedddddd after effects .....now waiting to see if it hits the "beeatch switch" the doctor said it's most effective with! Wow if that happens I might be as close to normal as I will ever be?

If I am , will you guys still let me come play? :p