For Kimberella - Pain Management Message Board

igy76 · 10-11-2003, 04:59 PM

Hi Kim-

Sorry if I seem impatient here or anything, it's just that I know I took awhile to reply back to YOUR reply on MY last post, and so what I had to say, I didn't want it to get lost in the shuffle of everything else around here. So I've just copied and pasted my last reply from what I had written in the "A sorta update" thread for your review below....

(Also, would you mind my asking how old you are?)

Okay, here's the thing that I've now realized I haven't been entirely clear on with in relation to my PM doc and the Topamax and everything (and when you hear, and I'm kind of wondering if you're gonna fall outta your chair or something

)

First off all, yes, my PM is who is giving me the Topamax, he is the ONLY doc I've been seeing through all of this. (he just brought up the idea of seeing a Neurosurgeon when I spoke to him on the phone this week, but that was if I had insurance) Also, I'm due to see him next this thurs, Oct 16.

In answer to your question about his goal dosage for it, we never really talked about that. See, the last real discussion me and my doc had about taking Topamax was after the first week or so after I started and I was on 2 pills a day (50mg total), and I popped into his office and asked him "So I guess this is a med that has to be in your system for awhile for it to really start working, because I've taking the 2 at bedtime..." And then right there my doc interrupted me and said "Well then take 2 in the morning, too. Take 2 three times a day, that's fine." But I've brought that issue up here before, when he seemed so arbitrary in the amount he wanted me to take, when you, other people, including then the pharmacist I then talked to said I should be titrating it. But OFFICIALLY he never talked to me about that. No, OFFICIALLY, those words I just transcribed above were really the last discussion we ever had about Topamax. In fact the only time I've talked to him since then was over the phone this past Tuesday about the MRI, finding out about the likely herniated disc in my neck. So, since at that time he told me ultimately it was okay to go up to 150mg a day, that's what I titrated up to. But with the side effects I've been experiencing, even though I'm now there (at 150), what I've decided to do, even though yesterday (thursday) was my titrate day, I would've normally added an addtl' 50mg, for now I'm going to stay at taking 6 pills (150mg) a day, since technically he's never authorized me to take 200mg a day. And I don't want to bother him any more before my appt day. I may go in next thursday and he may say that's no worry at all, going up to 200mg, especially since I'm starting to notice a little pain relief from it, ESPECIALLY since he'd LOVE to have me off the narcs. But the side effect of losing my train of thought in the middle of a conversation is getting to be a real ***** quite frankly, it's embarrasing. I hope it doesn't last much longer. Especially since I'm in the heart of a job hunt right now, and my cognitive skills are essential to me right now. But what's the trade off? If the Topamax is going to give me any pain relief, what if I can't take it because it essentially makes me too stupid to be able to get a job? But then I can't just count on the opiates for the pain relief, because my doc doesn't want to count on them for good. I lose both ways.

But that does remind me of question, if you would even know the answer Kim - is Topamax the kind of med that you can stop taking cold? What would happen? Do you have to titrate OFF it just as slowly?

Thanks so much. Your care in this matter has meant a lot to me

Kevin

Kimberbella · 10-12-2003, 12:16 AM

Hey Kevin!

LOL, you'll be pleased to know that I didn't fall off my chair (I was already laying down on my comfy couch hehe). Im 24 years old, (birthday is in December and I will be expecting expensive gifts lol) last year I graduated from a college, actually so I completely understand where your coming from in regards to finding work, the job market is so hard to enter right now, especially in the communication field (thats what I graduated in.. Communications). That being said.. lets go on to the other questions you mentioned before I bore you to death

Thats nice of your PM doc to do that for you, and I can also see how your at his mercy at the moment also... so Im guessing that your going to want to get as much information as possible now about Topamax because your not sure how much longer the PM doctor will be able to offer you appts. with him, right? What other meds are you on exactly? Did I read your on the Patch, Topa and MS Contin?

I was very concerned also when I was where you are now... You staying at 150mg sounds like the perfect plan, though

Especially because right now it will give your brain and body time to adjust to the Topa chemicals and hopefully you will notice some side effects have become less obvious (ie, tingles, tense muscles..) by your next appt in two weeks.

For me, it took about three weeks (of a steady dose of Topa) before my conversations and forgetfulness improved to the point where I began to notice a difference. Interesting note, people noticed this improvement before myself.

When getting off of Topa, it must also be tapered down also. You cannot just stop this drug, because it is an antiseizure drug and stopping an anitseizure drug, especially, can cause seizures, respiratory problems, and other complications if stopped abruptly, even if its not taken for the purpose for seizures.

Also, I dont know if this will help you or not, but... A couple weeks after I was on 200mgs I had my appt with my PM and I was still having congitive problems.. My mind was still fuzzy, I wasn't thinking right, even adding and subtracting was hard for me to do (balancing my checkbook in my head, which I was so good at doing before), and I was just doing stupid things in general, blah, blah, blah. Anyway, she said that if I lowered it by even one 25mg that would make a HUGE difference in how it effects my cognitive abilities... But she also said to try to stick with being on my dose for two more weeks to allow my body to even out and see if it will.. The catch was that by reducing could also make a HUGE difference in the return of the pain...

Needless to say, I stuck it out (with reservations lol) and, everything evened out perfectly! But, her saying that lowering my just one 25mg would make a HUGE difference leads me to believe (and hopefully gives you something) to fall back to, should the side effects become too harsh and you cant function, you might just need to increase at a much slower pace...

Another thing, Im not sure if you have read this or not, but Topamax (and any antiseizure meds) are known for their users to show signs of depression and most of them (the users) take some form of anti depressant... Myself, I take Lexapro as I have researched and found that most people that are on Topa take that Anti D and find that its a great mix. I did have a long period of depression recently, in fact, and its been 4 maybe 5 weeks that Ive been on the Lexapro and its worked absolute wonders for me!!! I cant say enough about it!!

You mentioned that you are starting notice some relief from the Topa.. how much do you think, on the scale 1-10?

I also started to feel relief before 200mg also and then I was able to decrease my Oxycodone (I was on that then) from 6-8 a day for several weeks until I was only taking a couple when the pain was bad on just those couple of days that the pain would occur... So the pain actually decreased in a short amount of time since I was at my "goal" and it continued to Increase relief without actually increasing my dose of Topa...

I hope I was able to answer some of your questions? Keep bringing them to me and Ill sure try to help you the best I can and if I haven't answered anything very well, just ask me over again and Ill try to do my best..

Also, if anyone else has something they want to say about ANYTHING, either Ive said or perhaps misspoke about in someway, please feel free to jump in, as I wouldn't want to steer Kevin the wrong way at all

!!

I wish that there was a way that I could email you some of the literature that Ive gotten, but we cant post email address on this site... If you can think of a way to do that.. let me know, k?

And Kevin, I wanted to throw in one more thing, now that your on the 150mg, and you've been on that since Thursday so far.. What might continue and what might bring you down that Im concerned about (and reason for bring up the talk of the depression) is the frustration and anxiety about your cognitive abilities temporarily slower.... but it will get better! It will!

I completely understand how hard it gets and can get, so please feel free to vent and post about stories or things that happen and perhaps we can learn from each other, and for those that might take this in the future they can get information about experiences from this drug through this... ...

Talk to you soon, and sorry the reply is so long!

Love and Prayers,

Kim

igy76 · 10-12-2003, 06:30 PM

Well Kim,

Anyway, thanks for all that info, you did answer a lot of my questions.

What you said about the depression as a side effect of the Topamax. Honestly, I guess I'd never lent much creedence to the idea of a pill being able to give you depression as a side effect before. Plus, with me now, I didn't think about it because I have PLENTY (and I mean PLENTY) of actual, practical issues in my life to put me into depression (and figured they already were - I've been in pretty much a stuper the last few weeks). And to give you a final concrete answer: I'm on the Lidoderm Patch, MSContin 15mg, Topamax 150mg/day. I was also on Percocet 5/325 but they ran out last week. Honestly right now's kind of weird because all the RX's came in kind of a patchy fashion. The Percs came first when I was only going to be on them (and actually just starting the Topamax then at 50mg/day), and then a week later he put me on the Patch and MSContin, but not giving me any set dosage for ANY of these things. Well, except for the patch, he said only I could 12hrs on and 12hrs off. But he said I could do up to 3/day of the MSContin but to "try to go easy with them", I assumed I was to use the Percs for BT (which I needed to and did), and then that was the same meeting where he game me the now infamous haze instructions for the Topamax. So this coming Thursday should be a very interesting appt. Not only will he have seen the actual MRI film, I'll get to see the tech report, and we'll talk about these dang Topamax side effects for real, and how they'll effect how he'll RX me narcs from now on.

Kevin

[This message has been edited by igy76 (edited 10-12-2003).]