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Topic: Its been a while since I was here (Read 494 times) |
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thenucman
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Its been a while since I was here
« on: Feb 3rd, 2006, 10:59am » |
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Hi all,
I had signed up on this forum several years back when I was trying to understand my 'condition'.
I'm back again.
What have I learned?
I love O2.  I have the use of O2 down to a science. 6-8 ltr/min is all it takes.
CH's are different for everyone ... very individualistic. Many shared characteristics, but subtle differences too. No one size fits all, which is what makes them so difficult to treat, I think.
For me, I have changed from episodic to chronic  .. getting worse in the winter months. I have my suspicions about this being sinus related, but can't seem to convince my neuro. Her focus is entirely on blood pressure.
I have many, many topics to read and get caught up to date on, but I wanted to leave a breif message (ok ..not so breif) first.
I will probably leave another about my most recent adventure into the land of Topamax. It wasn't pretty, or Kansas.
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Richr8
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Sorry you had...
« Reply #1 on: Feb 3rd, 2006, 11:28am » |
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...to come back.. I just started using Topamax myself. I have only been pf and sleeping of a day or two now and just starting to venture outside, so to soon to understand all of the side effects. I would be intersted to here your views or experiences with Top. The plan for the moment is to start weening off of it once my pred taper is done.
wishing you pfdan,
Rich
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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thenucman
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Re: Its been a while since I was here
« Reply #2 on: Feb 3rd, 2006, 12:50pm » |
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Hi Rich,
I tried Topamax as an alternative to Prednisone. Pred works for me most of the time.
I have actually tried Topamax twice. I just didn't learn enough from my first mistake.
First, though, remember ... everyone is different. This was MY reaction. An exception, to be sure.
I had a wild reaction to Topamax. Seems I am one of the few that react badly to it. My Neuro wanted me to get to 200mg per day. I had just tapered off pred and started on the topa. I was there in about 14 days starting at 25mg/day . I was having temps of 100.7, some of the usual side effects of disorientation, forgetfulness, etc. Around day 10, I was having a lot of trouble staying awake, even with tons of coffee. Days 15,16,17 I was asleep. It was so bad on day 16, my wife and son tried to wake me up shaking me hard, but couldn't. That scared the hell out of me. On day 17 I had about a half hour of lucid thought and discussion with my wife. I told her to take control of my pills and taper me off the topamax.
That was this time last year and the only good news out of it was that I didn't have another CH for 4 months!! That left me wondering WHATS UP WITH THAT?????
The rest of 2005, I would start gettting a CH, just one,hit a real short course (3 days 60,40, 20mg) of pred and be CH clear for 4 - 6 weeks. I am thinking ... this ain't too bad. I was so confident, I TURNED IN MY O2 EQUIPMENT!!.
Then winter hits and the CH's are bad. Between xmas and New Years I am scrammbling to get a script for O2 since my Neuro is ON VACATION!!! A full course of pred and I rebound right away. January, I go to my Neuro and have a meltdown CH in her office. When I am coherent again, I tell her "why don't I try the Topamax sleep method again".
I just finished my taper off topamax yesterday. It was a much rougher ride this time. I didn't follow the same protocol as I did the last time. I got up to 200mg faster, which really messed up my metabolism. 5 days of constipation, followed by 3 days of diareah. There is nothing like sitting on the toilet with diareah, sucking O2, then feeling like you might just want to throw up as well.
I did find that at the 200mg level, I wasn't having CH's. I adjusted the level down to 150 and would have just percivable CH's. Those were really weird, but it was as though I could actually define and control the threshold at which a CH occured, then control the CH completely with O2.
But, I digress. lol.
Anyhow, for me, the Topamax seems to have some build up that occurs over time because after about 10 days, I went out. I slept for 2 days, then tapered off of it. Today is my first topa-free day 
I am hopeful to be CH free for 3-4 months like last year. We'll see.
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BarbaraD
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Re: Its been a while since I was here
« Reply #3 on: Feb 3rd, 2006, 1:09pm » |
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About the topamax guys.... I keep telling everyone this (and it's probably contrary to what your neuro tells you, but I've been on it since 97 without too many side effects so...... who ya gonna believe - me or someone who ain't never took it) - take the WHOLE dose at NIGHT before bedtime!!!
And yes, everyone experiences different side effects, but the darn stuff works great for me (most of the time). I'm chronic and it's been my miracle drug. I've been up to 400mg a day and am now leveled off at 100. If the headaches get bad I up the dosage (100mg) and when they level off I go down on them (my neuro and I decided "I" knew when to do this and it's worked out really well for years). I still hit the BIG one occasionally, but normally keep them down to where I can handle them. And NO I'm not pain free, but I'm not ready to blow my brains out either.
O2 is great and if it works - use it. I'm all for NOT taking meds if you don't have to.
One word of warning... BE CAREFUL starting and stopping anti seizure drugs. That can be dangerous. (And yes, I've played with fire too, so I know what I'm talking about.)
Hope you PF days soon.
Hugs BD
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What don't kill ya, Makes ya stonger!
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Richr8
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Well, here is how it's going for me so far...
« Reply #4 on: Feb 3rd, 2006, 1:20pm » |
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...on the Topamax, a completely different experience, and condition it sounds like , so a little background. I am episodic. I have been suffering for fourteen years with an annual cycle that begin in October/Nov and lasts approx 12 weeks, that is unti I started pred tapers three years ago. My CH responds to the pred tapers about 4-5 days after I get to 60 mg. which usually takes about 3 weeks. Two weeks due to my own resistance to start the pred., and another week to face the fact that it's going to take 60 mg. and not 40 mg. to kill the beast. Stubborn, I guess. Anyway, since I've been on Verapamil as a preventive, my neuro wanted to try the Topamax on me to see if it would be more effective. Well the Pred makes such a mess of me anyway, I am in the 12% of folks pred destroys both physically and psychologically, that is, sleep depriviation, major anxiety, etc, who cold tell what was going on. Ayway, after a nitghtmarish first few days once I got to 100mg on the Top, just exhausted all the tiem, depresse, feeling useless, stumbling gait, cognitive difficulties, if it was listed as an SE, I had it. Then someone on the board suggested that I take the whole dose of Top at night before bed. At the same time I took addtional advice I found here about Melatonin and added that to my dailt regimen (6mg). Once I started doing that things began to improve. I started getting a little sleep and things got better quick. I'm just now in a position to starrt making an assessmnet of iwhether or not it's worth a shot. The Doc and I had discusse dumping th Top, but not until I was done with the pred taper, so for the moment , I am still on Verap and Topamax, and have about another 10 days to make a decision, but switching to a PM dosing really made a difference. Now today, I'll start tryng to get back out in the world and see how it goes. This is the first day that I've actually been able to get some things done around the house and so far , so good. I'll keep you posted.
Rich
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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Richr8
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It was Barb! Taht's right!
« Reply #5 on: Feb 3rd, 2006, 1:21pm » |
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You saved me!
Hugs!
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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thenucman
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Re: Its been a while since I was here
« Reply #6 on: Feb 3rd, 2006, 1:21pm » |
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Absolutely, Barbara. You are right on and I did not mean to sound like I was trying to scare people off from trying Topamax. On the contrary. Please do! I personally think its a much safer med than most of the alternatives out there, which is exactly why I tried it, twice.
I read all the drug info last year before I started taking it. There were siezure patients taking 1500mgs of the stuff, how bad could 200mg be, I told myself.
I had great hopes for Topamax last year when my Neuro told me about it. I was so disappointed when I had my reaction to it too. I was hoping that by keeping to a small dose this year that i would be able to tolerate it.
I fall into that 'Rare instance' category and don't mean to scare anyone off of trying Topamax. Especially at the low doses we typically start out at.
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thenucman
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Re: Its been a while since I was here
« Reply #7 on: Feb 3rd, 2006, 1:28pm » |
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yikes!!! you are doing the Topamax on top of the pred? OMG!
Sounds contradictory to me. At least from what the two did to me. The Pred sped my metabolism up, while the Topa slowed it down.
I'm not trying to give advice, but I am not to surprised you have trouble sleeping.
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Richr8
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Not am, are.
« Reply #8 on: Feb 3rd, 2006, 1:31pm » |
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Tapering. I hope you don't know more than my doctor. I'm feeliong better each day. It's been a rough ride.
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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Richr8
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It was a waking nightmare..
« Reply #9 on: Feb 3rd, 2006, 1:32pm » |
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..until I switched the topamax until bedtime and added the melatonin.
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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thenucman
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Re: Not am, are.
« Reply #10 on: Feb 3rd, 2006, 1:58pm » |
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on Feb 3rd, 2006, 1:31pm, Richr8 wrote:| I hope you don't know more than my doctor. |
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Of that, I am sure of. All I can tell you is how the meds I have taken have effected me, just as Barbara related her experience. You have no idea just how much I was hoping for her kind of experience. I am really afraid of the long term risk of prednisone usage. I am terrified of being out of range of O2 when I am in cycle. I have to fight with my insurance company for more than 9 pills a month of the triptan of your choice. Its enough to make one a little bitter. 
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| « Last Edit: Feb 3rd, 2006, 2:14pm by thenucman » |
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thenucman
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Re: Its been a while since I was here
« Reply #11 on: Feb 3rd, 2006, 2:35pm » |
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Quote:| been on it since 97 without too many side effects so...... who ya gonna believe - me or someone who ain't never took it) - take the WHOLE dose at NIGHT before bedtime!! |
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Thats awesome that you got turned onto Topamax so early. I was told about it for the first time last year like it was some new major developement.
I agree, most of thhe side effects are pretty mild and tolerable. Then, its finding the dose level you need for your CH's.
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bobbyj
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Re: Its been a while since I was here
« Reply #12 on: Feb 3rd, 2006, 8:30pm » |
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I will pray for you.
Do you have any problems with your mother? A fellow sufferer had his mom pass away and he felt all this weight lift away and he hasn't had an episode since.
Do you think it could be emotional anxiety deep in the mind that only gets to you in your sleep.
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thenucman
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Re: Its been a while since I was here
« Reply #13 on: Feb 3rd, 2006, 10:26pm » |
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uh.... ok.
Thx for the prayer.
Mom is fine, TYVM, at 79yo.
As for the deep emotional anxiety, I think I saw a Mel Brooks movie about that. It was pretty good.
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