Author |
Topic: Post-Episode Preventative Taper (jinx jinx) (Read 276 times) |
|
Lobster
CH.com Alumnus
New Board Hall of Famer
Gender: 
Posts: 2016
|
 |
Post-Episode Preventative Taper (jinx jinx)
« on: Apr 9th, 2004, 4:17pm » |
 Quote  Modify
|
(further jinxing this no-CH in 5-days thingy)
Seeking suggestions on how to handle the post-episode preventative taper...
Taking daily:
720mg Verapamil
125mg Topamax
How long to maintain the current dose?
Then how long to taper off each?
(3mo into the episode... normal episode is 2mo... so should be at the end)
Thx,
Rock... Hoping to bury it for another 2 or 3 years 
|
|
 IP Logged |
Rock beats Scissors.
|
|
|
magman
New Board Newbie
I love YaBB 1G - SP1!
Gender:
Posts: 6
|
|
Re: Post-Episode Preventative Taper (jinx jinx)
« Reply #1 on: Apr 9th, 2004, 4:29pm » |
Quote Modify
|
Hey Rock, glad to hear about the 5 days of PF. 
On the Topo...is that 125 per day or x2 per day?
My neuro had me go from 100 x2 to 75 x2 for 1 week, then 50 x2 as maintenance dose until next cycle.
When I hit 50 x2 I started having some shadows so I went back to the 100 mark and started the taper cycle again.
All has been fine for several weeks now at the 50 x2 dose.
Sorry, no help on verap....been about 15 yrs since i was on it.
Peace,
-dan
|
|
IP Logged |
|
|
|
Lobster
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 2016
|
|
Re: Post-Episode Preventative Taper (jinx jinx)
« Reply #2 on: Apr 9th, 2004, 4:49pm » |
Quote Modify
|
on Apr 9th, 2004, 4:29pm, Magman wrote:
On the Topo...is that 125 per day or x2 per day?
|
|
Heya Dan... that is 125 per day. I do 50 in the AM & 75 in the PM. Was tweaking the dosage when I went PF.
Rock
|
|
IP Logged |
Rock beats Scissors.
|
|
|
Edski_1
New Board Veteran
All the years combine...they melt into a dream...
Gender:
Posts: 197
|
|
Re: Post-Episode Preventative Taper (jinx jinx)
« Reply #3 on: Apr 9th, 2004, 5:05pm » |
Quote Modify
|
Ahhh, what constitutes "pain free"
The last neuro I saw, who put me on topamax, said "pain free is pain free"...
That's an awfully hard burden of proof. Pain receptors have a memory, and if every little twinge makes you reset the counter, a lot of may never truly be "pain free"
How long? Read some suggestion of anywhere from 2 weeks to 2 months...here I tend to go to the lower end.
So finally after a month or more where all I had were slight shadows, I've abandoned the totally pain free criteria, and played doctor on myself...I took myself off topamax and in the last week have had a total of 100 mg. Not sure how many days I have had none, but the results have been good. (btw stopped taking it since I'm unemployed and currently have a choice of no insurance or overpriced COBRA  )
I think, hope, my suspicion that the cycle was broken is true. 
But as we say in the computer business, "your mileage may vary"...
|
|
IP Logged |
This is the mystery of the quotient; upon us all a little rain must fall...
|
|
|
Hai
New Board Newbie
You Only Have One Life to Live - Why Not Try IT!
Gender:
Posts: 41
|
|
Re: Post-Episode Preventative Taper (jinx jinx)
« Reply #4 on: Apr 9th, 2004, 6:46pm » |
Quote Modify
|
I do agree that after 2 weeks of being PF, you should start dosing down off the meds. I am almost positive that my CH's. Everytime I had an episode, after 2 weeks I was off the meds, and back to normal life (Ummm BEEER). No CH for 1-5 years.
This time, I stayed on the preventatives after my cycle broke, and low and behold 3 months later the CH's are back, yet on the other side of my head. The doc raised the dosage on the preventatives with no luck. Now I am having to take a different route to try and crack the cycle. At this rate, iI will probably just be relying on Imitrex for the bad ones, until the cycle plays itself out, cause at this point nothing is working, and I refuse the Lithium treatment.
In a nut shell, drop the meds after 2 weeks of PF, and I doubt you will have any issues. If so, you can always go back on em...its better than risking rebound, with the meds having no effect later due to the CH's adapting to them like a texas cockroach does to pesticide.
Hai
|
|
IP Logged |
|
|
|
Thorns
New Board Junior
"Ahhhh....that feels good!"
Gender:
Posts: 70
|
|
Re: Post-Episode Preventative Taper (jinx jinx)
« Reply #5 on: Apr 13th, 2004, 9:42pm » |
Quote Modify
|
I'm not on topamax but my current plan for the verapamil is to dose down from 480 mg/day to 120 mg/day after this cycle and then back up again in the fall.
I actually got this idea from a few postings on this site and my doctor agreed to try it. Especially since each year it seems like I need more verapamil than the previous. But I have always just maintained the regular dose in the past. Not sure what you would step down to for 720 mg 
Maybe someone else around this dose will chime in and offer some assistance?
Thorns
|
|
IP Logged |
|
|
|
HypnoticFreddy
Guest
|
|
Re: Post-Episode Preventative Taper (jinx jinx)
« Reply #6 on: Apr 13th, 2004, 10:03pm » |
Quote Modify
 Remove
|
Rock,
I posted on another thread about this but I am up to 175 mg of Topamax (100 mg in PM, 75 mg in AM). I started at 50 mg, and was at 75 mg after 7 days. After 7 days, I was and have been PF (that is 14 days!!!!). For reasons that I am not sure, I have continued to increase my dosage and am now at 175 mg.
I see my neuro on Apr 28th. I am sure I will taper down, in fact, I only took 75 mg tonight.
I guess these matters are really best answered by the prescribing doctors.
We all know that sudden stopage of taking pyschotropic medicines is dangerous.
Once again, I bow down and kiss the feet of the Topamax Goddess.
-Scott
|
|
IP Logged |
|
|
|
Thorns
New Board Junior
"Ahhhh....that feels good!"
Gender:
Posts: 70
|
|
Re: Post-Episode Preventative Taper (jinx jinx)
« Reply #7 on: Apr 13th, 2004, 10:51pm » |
Quote Modify
|
I've seen alot of positive postings with Topamax lately in fighting CH--just curious as to the $$$ of this w/out insurance?
Thorns
|
|
IP Logged |
|
|
|
HypnoticFreddy
Guest
|
|
Re: Post-Episode Preventative Taper (jinx jinx)
« Reply #8 on: Apr 13th, 2004, 11:00pm » |
Quote Modify
Remove
|
Thorns,
I just did a quick Google search and found a Canadian pharmacy that sells topamax (100mg 60TAB) for $144.12. Quite cheap compared to Imitrex.
For me, 100 mg per day knocked the CHs away. So, that is basically like $2.5 per day. Not too bad.
-Scott
|
| « Last Edit: Apr 13th, 2004, 11:01pm by HypnoticFreddy » |
IP Logged |
|
|
|
Thorns
New Board Junior
"Ahhhh....that feels good!"
Gender:
Posts: 70
|
|
Re: Post-Episode Preventative Taper (jinx jinx)
« Reply #9 on: Apr 13th, 2004, 11:16pm » |
Quote Modify
|
HF,
Thanks for the info. That's not too shabby; I'll definitely have to look into this a little more now. The verap alone just isn't getting the job done.
Thorns
|
|
IP Logged |
|
|
|
HypnoticFreddy
Guest
|
|
Re: Post-Episode Preventative Taper (jinx jinx)
« Reply #10 on: Apr 13th, 2004, 11:58pm » |
Quote Modify
Remove
|
Thorns,
Yeah I have heard of Verap/Lithium combo. Not so sure about Verap/Topamax combo.
Good luck.
-Scott
|
|
IP Logged |
|
|
|
Hai
New Board Newbie
You Only Have One Life to Live - Why Not Try IT!
Gender:
Posts: 41
|
|
Re: Post-Episode Preventative Taper (jinx jinx)
« Reply #11 on: Apr 15th, 2004, 6:54pm » |
Quote Modify
|
Good posts, but I really want to make sure I get my point across. If you can taper down to 0 on the meds, and be PF, from then forward, the cycle is over....stay off the drugs.
IMHO
Remaining on them only increases your chance of rebound, and the drugs not having any effect, even with an increased dosage when the CH's come back.
Looks like my cycle is going away, been PF for 5 days now, with a few minor headaches, to practically none. I have already dropped everything except for the preventative (BP MED) and my normal daily dosage of Klonopin (for another disorder of mine, anxiety).
Yeah but if you were on Topomax, be care how you taper down. For me I dropped my doses down quick without instructions from the doc, and had no issues ...but I have heard of nightmare stories from people who tapered down 2 fast ....
Hai
|
| « Last Edit: Apr 15th, 2004, 6:56pm by Hai » |
IP Logged |
|
|
|
HypnoticFreddy
Guest
|
|
Re: Post-Episode Preventative Taper (jinx jinx)
« Reply #12 on: Apr 15th, 2004, 11:21pm » |
Quote Modify
Remove
|
Hai,
As a fellow topamxer,
I am on 150 mg now. 17 days PF-free. Really I was on 75 mg when the headaches stopped, but I continued to increase 25 mg very three days until I hit 175 mg, and then just backed down to 150 mg a few days ago.
Dang, I am just so f'n pysched the headaches are gone and that it really looks like the 'Max did the trick.
I see my Neuro at the end of April and I wll ask about reduction, because of course I would like to take the least amount of dosage as possible (to fend off the CHs).
Alluding to your point, these are decisions are best handled by the prescribing doctors.
I know, I have seen from Google searches (from Headache clinic sites), tapering up/or down charts and such, but I think it is safe, especially with a drug where I have read 2 articles of acute poisoning which led to death in 2 females.
-Scott
|
|
IP Logged |
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss